Like many people, I’ve enjoyed reading for as long as I can remember. Reading has always been a passion of mine and it was part of the reason why I decided at a young age to write a book. Throughout my years of being a bookworm, I have read many books that have inspired me to write more about my life experiences with Cerebral palsy; such as Mice of Men by John Steinbeck and Forrest Grump by Winston Groom.
These books have helped me cope with my Cerebral palsy throughout the most difficult times of my life. As an advocate and author, I strongly feel that we need more authors to write about people with different types of disabilities such as Cerebral palsy, Autism, Muscular dystrophy, and more. I truly think that if more authors start writing about disabilities and inclusion then it would help society have a better understanding of what life is like for someone with a disability.
Picture of Author: Tylia Flores
How books that talk about disabilities have helped me:
More books like this will allow children with disabilities to have someone to look up to, even if it’s just a fictional character. For example, when I was in the 5th grade I was asked to read Howie Helps Himself in front of the whole student body to discuss the topic of students with disabilities. At the time, I was a little girl with buck teeth using a quickie wheelchair.
I stood out in mainstream classes like a sore thumb, and I wanted to fit in society as an 11-year old who loved Disney Channel, my Nintendo DS, and pop music, rather than for what people saw on the outside. After reading Howie Helps Himself to the student body I learned to be proud of the young little girl that I was at the time. I also learned to love myself despite the fact I had this health condition, Cerebral palsy, that I would have to live with forever.
How having more published books about disabilities will benefit society:
We need more awareness about disabilities in literature so that young children, teenagers, and even adults with disabilities don’t feel isolated from society. Having more discussion and literature that brings up the topic of self-identifying and acceptance when it comes to people with disabilities as well as the different types of disabilities that exist, could help reduce bullying in schools. This is because students would be more aware of people with disabilities and have a better understanding that would help them adapt to communicating with people in society that have disabilities.
That is why I chose this career path of being an author and an advocate, so that I could help people with disabilities through my literature and advocacy work. I continue to work on my writing and my advocacy so that people with disabilities don’t have to feel the loneliness that I felt earlier in my life.
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
March is Cerebral palsy awareness month, which is dedicated to the 17 million people diagnosed with Cerebral palsy around the world.
I first got diagnosed with Cerebral palsy at the age of 2 years old. Growing up with a condition like Cerebral palsy wasn’t the easiest task and I had many obstacles to face. But I overcame those and now I’m able to share how I’ve overcome the hurdles in my life. These are hurdles that I thought where huge at the time. I can now share my journey through my advocacy work and the stories that I’ve written.
Why Cerebral palsy awareness is important
Getting the chance to spread awareness for Cerebral palsy for a full month is awesome, though I celebrate Cerebral palsy Awareness 365 days a year. While every day is a great day to spread awareness, March is definitely a month that I look forward to because it gives me a chance to educate people more about my condition. I like to share my experiences about what it’s like to live in a world that you constantly have to adapt to, since not everything is accessible to you as a person with Cerebral palsy.
Picture of Tylia Flores, Author
For example, sometimes when I go to store with my mom, we tend to get people who stare and point at me like I’m E.T.. It feels like I landed on earth and befriended a boy named Elliott. Meanwhile, I’m just an average 24-year-old that uses a wheelchair and has a passionate, creative mind that I tend to use for my stories that I have to tell. I’m not any different from anyone else and I just want to be accepted in society as I am and not as anything different. Cerebral palsy awareness month allows me to bring awareness to that.
Cerebral palsy Awareness month also gives me a chance to reflect on how far I’ve come in my life with Cerebral palsy. I get to look at all the milestones I’ve reached, as well the ones I will continue to reach as my journey with Cerebral palsy continues. I love to look back at the stories that have been written by me and the people I’ve been impacted by, such as many of my friends who are also advocating for Cerebral palsy awareness. We’re all in this together and nothing could break that bond between us all.
I’m not fighting for a cure, I’m fighting for awareness
Cerebral palsy is the most common childhood disability, yet I feel that there’s very little awareness about the condition in comparison to other disabilities (such as Autism). I’m constantly reminded of the lack of awareness as I wheel around in society and don’t see one touch of green in honor of Cerebral palsy awareness in March, instead of just for St. Patrick’s Day.
My advocacy is not about finding a cure for me, it’s about spreading awareness to the people that are unaware of Cerebral palsy and what it is truly like to live with this condition. People seem to think it goes away when your childhood is over, when really childhood is just the beginning of the difficult journey of living your life with Cerebral palsy. In my opinion adulthood is the hardest part because you have to navigate through life and it’s difficult, but having a month that brings awareness to this struggle is awesome.
About the Author:
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
Great America Smokeout, a day where Americans who smoke are encouraged to live a smoke-free life. The event has been running for over 40 years and is sponsored by the America Cancer Society (ACS) The event takes place annually on the third Thursday of November. To mark the day we are sharing Chris’s journey to quit smoking cigarettes and sharing some of the tips he found helpful.
It’s Hard But Worth It
Quitting smoking is hard, about as hard as quitting heroin (or so they say). And having the experience of quitting heroin and then smoking, I can say that this saying is pretty accurate! I was a little over 2 years clean and sober from drugs and alcohol when I decided to quit smoking cigarettes. I didn’t quit cold turkey, I used my vape to get myself away from actual cigarettes. This was NOT easy, the vape is very different from cigarettes. But with hard work, talking to someone when I wanted to smoke, and eating carrots like they were cigarettes I was able to get off the cigarettes.
About six months later I decided that I wanted to get off the nicotine that was in my vape juice, I gradually decreased the amount of nicotine until I was down to zero. Now I still vape, but without nicotine and not nearly as much. I know that it really is possible to quit cigarettes, no matter how hard it is, with hard work, a lot of willpower, and the support of people around you.
Ways To Quit Smoking
The American Cancer Society (ACS) has a site with a lot of resources on how to quit. There are multiple other methods that can be used to quit smoking, including electronic cigarettes, nicotine replacement therapy, and prescription drugs.
The first step is to decide what method you want to use, the one you think will work best for you and that you will be able to stick to. The other most important step to beginning to quit is to gather support, whether that is family, friends, stop-smoking programs, telephone helplines, or counselors. Once you’ve chosen your method, gathered your support network, you need to pick a quit day. Mark it in your calendar, and share that day with your friends and family so they can hold you accountable.
Another helpful thing is to remove all your ashtrays and cigarettes in your possession in your home, car, and work. The last thing to do before your quit date is to pick which method of quitting you wish to use and to get everything prepared for you to use it on your quit date.
The most important thing to do when you reach your quit date is not to give in to temptation, no matter what. This is hard, and you need to keep yourself busy so you can get through the rough days ahead. Whether you do that by exercise, a hobby, or anything else to distract yourself. Another thing that is helpful is to avoid situations where the urge to smoke is strong and to avoid people who are smoking. This doesn’t mean that you stop being friends with people who are smokers, just don’t be around them while they are smoking. The last suggestion is to change your routine. This is because smoking will still be a part of your daily routine, and the goal is to change those habits so smoking isn’t a part of it. These changes can be as simple as drinking tea instead of coffee or eat breakfast in the kitchen instead of the living room.
The 4 D’s
You also must be prepared to have cravings. These are just part of quitting.
The ACS recommends using the 4 D’s:
Delay– just pause and wait 10 minutes, and repeat the 10 minutes if you need to.
Deep breathe– slowly breathe in through your nose and out through your mouth, and then if you need to ground yourself by finding 5 things you can see, 4 things you can hear, 3 things you can feel, and 2 things you can taste.
Drink water– this will help flush your system of the nicotine as well as keeping you hydrated.
Do something else– get up and move or do something you enjoy when you feel that urge to smoke. Some activities will trigger the urge to smoke, be prepared for that.
The Withdrawal Symptoms Will Pass
Remember that nicotine is a drug, and it will have both physical and mental withdrawal just like any other drug. These physical withdrawal symptoms include intense cravings, sweating, nausea, headaches, coughing, sore throat, insomnia, and weight gain. These symptoms typically peak around two and three days after quitting. But if you ignore them, they will eventually go away. The symptoms will most likely go way in two to four weeks, but some people still experience them for several months, however not as bad as in the beginning.
The mental withdrawals include depression, grief, a sense of loss, frustration, impatience, anger, anxiety, irritability, trouble concentrating, and restlessness or boredom. The hardest part for most people who go through nicotine withdrawals are the emotional effects, rather than the physical ones.
It Can Be Done
Overall, quitting smoking is difficult but it is possible. What I needed more than anything was to truly want to quit smoking. I could say that I had or needed to quit all the time, but I had to be truly ready to quit. I had to want it. And once I wanted it, I had to be prepared for the withdrawals, both physical and mental. I personally had to replace the habit with something else, I chose to vape to replace smoking, some might choose to eat a certain type of food to get over the habit so it’s all dependent on what works for you! You will need something to get through the cravings because they can hard to get through. One thing I learned when I got clean and sober was to set a timer, and that worked for quitting smoking as well. For example, if I had a strong craving, I didn’t think I could get through the craving, but I could get through 5 minutes. So I set a timer for 5 minutes and could get through those minutes, and then I reset the timer to go again. And eventually the craving will pass and you’ll be okay. That’s just my experience, and everyone has their own tricks on how to quit, take what works for you and leave the rest. But one more time-it is possible to quit smoking.
About The Author
Chris is a 23 years old college student, living with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar illnesses to his.
NOTE: In this article, I will be using PERSON FIRST language. Having grown up around not only my brothers, but also in a community where many people have an autism diagnosis, this is the language I have most often been told that the people with autism around me prefer. Please keep in mind that the general/most preferred language when addressing people with autism/autistic people varies from country to country, and even from city to city, so please don’t take offense if I use language that is not what you prefer.Technically, there is no collective right or wrong option between person-first language and identity-first language, it all depends on the personal preference of each individualwho has an autism diagnosis.
Not only am I the oldest of three children and the only female among my siblings, I am also the only child out of three that doesn’t have a diagnosis of autism. Having even one family member who has autism can be challenging, however, I have also found it to be quite rewarding. I love my brothers with all of my heart, and I wouldn’t change them for the world. My oldest-younger brother has mild autism (which used to be defined as Asperger’s, however, Asperger’s is no longer considered a diagnosis in the DSM-5). My youngest-younger brother has moderate autism. I thought I’d take the opportunity to write about my experiences growing up with siblings who have autism. I’ve seen a lot of people online lately focussing on the negative aspects of autism, I thought I’d write an article about some of the ways my brothers have enriched my life.
I can read anywhere, no matter the amount of noise.
One benefit of growing up with two brothers who have autism is that I can concentrate on reading anywhere, no matter what the noise level. For example, I could read a novel in the middle of a bustling train station or a busy airport with no issues. Children with autism are known to experience meltdowns (loss of behaviouralcontrol due to being overwhelmed, which can manifest as yelling, screaming, and crying) quite often, and my brothers weren’t (aren’t) exempt from that. As a result, I’m used to high amounts of noise and can concentrate through it. If you would like to learn more about meltdowns and autism, and why a meltdown is different to a temper tantrum, you can visit this page by the UK National Autistic Society: https://www.autism.org.uk/about/behaviour/meltdowns.aspx
Also, I can sleep through quite a bit of commotion. When I’m in a deep sleep I can sleep through almost everything; storms, mild earthquakes, you name it. Which is lucky, because between painsomnia and chronic fatigue, I need all the sleep I can get.
Hyper-awareness of people I meet.
I think it was last year that I met a friend of a friend for the first time. We shook hands in greeting, and in that span of a few seconds, I began to wonder… I’m not sure what it was, whether he wasn’t maintaining eye contact or if he held himself a certain way, but right away I was thinking “I wonder if he has autism”. After that brief moment, I didn’t think about it again until a few weeks later when my friend brought up that this guy did, in fact, have (very mild) autism. This occurs relatively often for me, and it’s not even a conscious thing. This may seem very weird to anyone who has not spent a lot of time around people with autism; it may even around like I’m being unfair in making these snap judgements. However, if you have a parent. child, sibling, or close relative that you spend a lot of time with that has autism, you may understand. This hyper-awareness, if you will, is helpful because it means I can adjust my behaviour if need be in order to make the person I am communicating with more comfortable. For example, some people who have autism find maintaining eye contact with others very uncomfortable, so if I suspect that is the case with the person I am talking to, I will not attempt to gain eye contact, nor would I feel upset about it.
I find females a lot harder to read than males, though. Even though I’m female myself, most of my knowledge about autism comes from growing up with my brothers. While I have interacted with many people of all different ability levels in my life, I have spent the most time with my brothers. Autism manifests differently in women than it does in men, and I’ve spent most of my time studying the cues of my brothers and have become used to spotting it in males. As a result, I could meet a woman with mild autism, have a long conversation with her, and never know about her diagnosis until (if) she told me. This hyper-awareness is a weird benefit of growing up around people who have autism
I have gained patience and understanding.
Having my family and I receive judgemental looks and reactions has taught me how horrible it can be to experience this kind of behaviour. I have learned not to judge people by their appearances or by their behaviour, at least until I understand the motivations behind saidbehaviour. A child who appears to be having a temper tantrum may actually be experiencing a meltdown due tobeing overwhelmed. A child who is making constant noises/hand gestures or hiding under tables may be stimming (self-soothing, repetitive behaviour) or hiding due to feeling anxious. If you would like to learn more about stimming and autism, you can visit this page by the Child Mind Institute: https://childmind.org/article/autism-and-stimming/
When you are communicating with a child who has autism, you need to have a lot of patience. This is because autism can cause processing disorders, which can result in the child taking longer than expected to answer a question. It can also cause speech issues, such as difficulty pronouncing certain sounds. There are also other things that can impact interaction with a child who has autism, such as them being prone to losing their train of thought or becoming distracted/ going off on tangents. Not only did my brothers help me to widen my communication skills, but they also taught me how to be patient when dealing with their, sometimes disruptive,behaviour.
There were times in my childhood, however, when my brothers pushed my patience levels past breaking point. Since I struggled with chronic pain from a young age, the pain and fatigue sometimes decreased the amount of patience I had towards my brothers. How my parents coped with a cranky, in-pain preteen and two boys with autism I will never know.
My brothers are a blessing
Yes, there have been struggles growing up, but my brothers have taught me so much. They’ve inspired me more then they will ever know. It hurts my heart to know that people like my brothers get treated badly by others as a result of something beyond their control. Autism is becoming more and more widely understood, and I hope that someday Autism isn’t seen as a negative thing, but rather as a merely different thing.
Autism runs in my family (even if I don’t have it), so I’ve come to terms with the fact that if I have biological children, at least one will likely have autism. I’m not worried, however, because if my brothers have taught me anything, it’s that the blessings in life can come in the most obscure fashions.
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
Cerebral palsy, a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth. It is the most common childhood condition in the world. 6th October is Cerebral Palsy Awareness Day I wanted to write about the condition and famous people who have made an impact on how people view people with Cerebral Palsy.
Why Talk About Cerebral Palsy
Spreading awareness for Cerebral palsy is important because there’s very little awareness about the condition. It’s very important that we all come together as a community and as a nation to break all the stigmas about cerebral palsy. For example one of the most common misconceptions about cerebral palsy is that people with cerebral palsy are not likely to accomplish anything because of the severity of the condition. When truth be told this is false take a look at all these amazing celebrities that have cerebral palsy but have made a huge impact on society and the way we look at cerebral palsy.
6 Famous Names With Cerebral Palsy
Micah D. Fowler born March 8th, 1998 who is mostly known for his roles in Abc’s Sitcom ” Speechless” Micah also made appearances on Nick Jr.’s preschool shows Blue clues and Sesame street Miach has created a new way for screenwriters and show creators to break the stigmas about Cerebral palsy and give insight on what it’s like to have a condition like Cerebral palsy.
Christopher Widdows “Steady Eddy ” born on December 7, 1968, is an Australia comedian with cerebral palsy who brings humor to others while embracing his disability in a positive light he made his first appearance in the limelight in 1992. Ultimately Stedy Eddy has taught us that having Cerebral palsy is a humorous journey and we all should embrace it.
Christy Brown Irish author and poet, painter was born on June 5th, 1932 he was only able to write and paint with his toes of one foot he was most recognized for his autobiography that was adapted into a film in 1989 entitled My Left Foot. Starring Daniel Day-Lewis.
karen killilea Born august 18th 1940 was born 3 months prematurely later on her parents found out she has Cerebral palsy so her mother Marie Killea decides to write books in honor of her daughter’s journey with Cerebral palsy which is apart of the new yorks best selling list. her mother Marie was an active advocate for Cerebral palsy.
Abbey Nicole Curran born on July 28th, 1987 diagnosed with Cerebral palsy at the age of 2. Abbey was America Beauty pageant constant from Iowa she is a current chairwoman for her non-profit ” “The Miss You Can Do It Pageant” for young girls and women with special needs she is also an author of a book untiled ” The Courage to Compete: Living with Cerebral Palsy and Following My Dreams.
Dan Keplinger born on January 19, 1973, Artist Dan Keplinger was featured in the documentary short oscar-winning ”King Gimp” Dan is an also is a motivational speaker and currently lives in Maryland and still paints.
Who Inspires Me The Most
As a 24-year-old woman with Cerebral Palsy I look up to comedian Josh Blue who was born with cerebral palsy but uses his condition to make thousands of people laugh.
Turning a negative situation into a humorous one is something I like to do too. The main thing I want people to know about cerebral palsy is that we can achieve our dreams just like everyone else can! it may take us a while but eventually, we will get there. We will stomp on Cerebral palsy one step at a time. There are many people that have cerebral palsy but hasn’t allowed it to stop them achieving their goals
About The Author
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
The International Ataxia Awareness Day is on the 25th of September each year, with the aim of raising awareness about this rare condition. The Mayo Clinic identifies ataxia as “a lack of muscle control or coordination of voluntary movements.” This lack of muscle control can impact the movement of the arms, legs, neck, head, and the muscles required to swallow, breathe, and create speech. The symptoms of ataxia evolve over time in a progressive manner.
Symptoms of Ataxia
The symptoms of ataxia can arrive suddenly or develop slowly over time. Depending on the cause and type of ataxia, symptoms can develop and any stage in life. As ataxia is a sign of certain neurological disorders, it is important to be aware of these symptoms:
Poor coordination, resulting in difficulty with fine motor skills, such as eating, buttoning your shirt, or writing.
If you experience any of these systems persistently and aren’t aware of having a condition that causes ataxia (such as muscular sclerosis), then you should consult your doctor.
Causes of Ataxia
Ataxia can often be a sign of an underlying condition. Persistent ataxia is normally the result of damage to the part of your brain that controls your muscle coordination (the cerebellum).
Ataxia can be caused by hereditary genetic disorders, but it can also be caused by many conditions, including stroke, head trauma, a tumour, cerebral palsy, brain degeneration, alcohol abuse, autoimmune diseases (e.g. multiple sclerosis), certain vitamin deficiencies, toxic reactions, and certain medications.
Ataxia can not be cured, but it can be treated. Treatments vary depending on the cause of the Ataxia. Some adults who develop ataxia never find out the specific cause of their condition.
Types of Hereditary (Inheritable) Ataxia
The first group of hereditary ataxias are Autosomal dominant ataxias. Autosomal dominant ataxias only need one abnormal gene to be passed down from one parent to result in you getting the disease. Each child with a parent who has an autosomal dominant ataxia gene has a 50% chance of inheriting the ataxia gene and developing the disease. The two types of autosomal dominant ataxia are Spinocerebellar Ataxia and Episodic Ataxia.
The second group of hereditary ataxias are Autosomal recessive ataxias. Autosomal recessive ataxias need two abnormal genes (one from each parent) to be passed down to result in you getting the disease. Each child of parents who are both carriers of the gene has a 50% chance of becoming a carrier themselves, and a 25% chance of developing the disease. Two types of autosomal recessive ataxia are Friedreich’s ataxia and Ataxia-Telangiectasia.
There are also other ways Ataxia can be inherited. Mitochondrial Ataxias can pass from mother to child through defected mitochondria in the mother’s eggs.
Types of Acquired Ataxia
Acquired ataxia occurs when someone suddenly develops these symptoms, without a family history of ataxia, as a result of an external cause. The two types of acquired ataxia are Sporadic Ataxia and Multiple System Atrophy (MSA). For some people who develop Multiple System Atrophy, they may have first been diagnosed with Sporadic Ataxia before their symptoms progressed.
How Ataxia Can Impact Everyday Life
There are many ways that the symptoms of ataxia can impact everyday life. Here are some examples: Someone with developing ataxia who is unsure what is happening may feel clumsy and disheartened by their new symptoms. At first, they may alter the way they walk in an attempt to maintain balance as waking starts to become difficult. Previously active people may have to give up certain hobbies, such as sports, due to struggling with mobility. Even moderate exercise can result in fatigue and spasms when you have ataxia. As the ataxia progresses, a mobility aid or walking aid may be employed, and there is a high risk of injury due to falling as a result of lack of balance. Many people with ataxia need help with personal hygiene, eating, and dressing. Along with all these other symptoms, their speech can deteriorate. As it does, this causes communication issues, which will require the assistance of a speech therapist.
While there is currently no cure for ataxia, research is looking very promising. There are many ways that those impacted by ataxia, either directly or through a friend or family member, can get involved in fighting ataxia. There are plenty of ataxia awareness events and research trials that can be found on the internet if supporting the search for a cure interest you. For more information on ataxia or International Ataxia Awareness Day, you can visit this webpage by the National Ataxia Foundation: https://ataxia.org/what-is-ataxia/
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
TRIGGER WARNING: Contains detailed information about women’s genitalia and references to fetal fatality.
Gynecological cancers aren’t necessarily something that we hear a lot about, however, they are something every woman should know about and be on the lookout for. As defined by memorialcare.org, gynecological cancer is “an uncontrolled growth and spread of abnormal cells that originate from the reproductive organs.”
These abnormal cell growths can then also spread to other parts of the body, which results in more tumours forming where they spread. There are several types of gynecological cancers; including ovarian cancer, cervical cancer, uterine or endometrial cancer, vaginal cancer, and vulval cancers.
Some gynecological cancers have been referred to as “silent killers” because women can often be unaware of their signs and symptoms. In these cases, the cancers may not be caught or treated until it is too late.
Types of gynecological cancers:
Cervical cancer: Cervical cancer is a cancer that develops in the cervix, the part of the uterus that opens up into the vagina. Cervical cancer is caused by abnormal changes in one of the two main cell types of the cervix.
Cervical precancers normally don’t have symptoms, however, it is the only gynecological cancer that can be prevented by regular smear tests. Symptoms will often only show once the cells turn into cancer and start to invade the deepest parts of the cervix or other surrounding organs.
Ovarian cancer: Ovarian cancer is cancer that develops in the ovaries. Ovarian cancer is the seventh most common cancer in women. There are four types of ovarian cancer:
Epithelial ovarian cancer, which is the most common ovarian cancer, forms on the surface of the ovary or the fallopian tube;
Germ cell cancer, which is an uncommon ovarian cancer that develops in the cells which form the eggs in the ovaries. This cancer normally afflicts teenagers and young women, and usually is found in only one ovary;
Stromal cell cancer, which is also rare and starts in the cells that hold the ovarian tissues together and create female hormones
Familial breast-ovarian cancer syndrome, which is a common inherited condition that causes 15-20% of all ovarian cancers. It is recommended that all women who have epithelial ovarian cancer are tested for this condition.
Uterine/Endometrial cancer: Uterine/Endometrial cancer is cancer that develops in the lining of the uterus (also called the endometrium). The most common symptom for this cancer is abnormal vaginal bleeding. Postmenopause, any abnormal vaginal bleeding or brown discharge may be a sign of uterine/endometrial cancer. However, younger women must be aware of these symptoms too.
Vaginal cancer: Vaginal cancer is cancer that develops in the vagina, which is the muscular tube that connects the uterus to the outer genitalia. Most vaginal cancers are in the lining (squamous epithelium) of the vagina.
There are four different types of vaginal cancer, their diagnoses depending on where the cancer began:
Vaginal squamous cell carcinoma is the most common type of vaginal cancer, and begins in the thin, flat cells that line the surface of the vagina;
Vaginal adenocarcinoma begins in the glandular cells on the surface of the vagina;
Vaginal melanoma begins in the pigment-producing cells in the vagina;
Vaginal sarcoma, which develops in the smooth muscle cells or the connective tissue cells of the vagina walls.
Vulvar cancer: Vulvar cancer is a rare cancer that develops on the inner or outer lips of the vagina, the clitoris, or the opening of the vagina and its glands. Vulvar cancer is highly curable if caught early, however, treatment can impact the appearance of the vulvar area, sexual function, and the function of the bladder and rectum.
Protection from Human Papillomavirus (HPV) infection reduces the risk of developing vulvar cancer. Both self-examinations of the vulvar area for abnormalities and annual pelvic examinations can result in the early detection of vulvar cancer.
Gestational Trophoblastic Disease (GTD): Gestational Trophoblastic Disease is a rare group of pregnancy-related interrelated tumours that lead to the abnormal development of the placenta. Over 80% of these cases are non-cancerous, however, I feel this disease is important to mention in this article.
There are three types of GTD:
Hydatidiform mole (also called “molar pregnancy”) occurs when the fertilization of an egg that lacks maternal genes causes an abnormal pregnancy. Common symptoms of a hydatidiform mole are feeling pregnant while experiencing vaginal bleeding, abdominal bloating, severe nausea and vomiting, fatigue and shortness of breath due to anemia from blood loss, signs of an overactive thyroid, and high blood pressure due to pre-eclampsia.
Choriocarcinoma is a form of GTD that is even rarer than molar pregnancy and spreads rapidly throughout the body and requires intense treatment. It can sometimes begin as a molar pregnancy or as the tissue that remains in the uterus following a birth or miscarriage.
Choriocarcinoma can be symptom-free, but some symptoms may occur based on the organs that are involved. It can cause complications in the uterus resulting in vaginal bleeding and unusual discharge; complications in the lungs resulting in coughing up blood, shortness of breath or chest pain; complications in the liver resulting in abdominal pain; complications in the brain resulting in headaches, issues with vision, convulsions, and weakness or loss of function; complications in the kidneys causing blood in urine; and complications in the bowel causing blood in stool/poo.
Placental-site trophoblastic tumour is a very rare form of GTD that develops in the uterus at the spot where the placenta is attached. These tumours dig into the muscle layer of the uterus but don’t normally spread throughout the body. All types of GTD can be treated, and in the majority of cases, the treatment leads to a cure. Most women who have had a single case of GTD can then have normal future pregnancies.
Signs and symptoms of gynecological cancers
General gynecological cancer symptoms to look out for:
Unusual vaginal bleeding or discharge
Abdominal (stomach) pain
Pain or burning
Pain during sex
Itchy skin around the vagina
Lump/s in the vagina
Sores, growths, or ulcers in the genital area
Vaginal odor
Trouble passing urine or bowel movements
Ovarian cancers, while being the deadliest of the gynecological cancers, do not currently have any effective screening tests to detect it. There are, however, some specific symptoms women can look out for:
Bloating of the abdomen
Pain in the abdomen/ pelvic area
Having trouble eating or feeling full quickly.
Is gynecological cancer preventable?
There are some things you can do to help lessen your chances of developing gynecological cancers.
Reduce your exposure to the HPV virus: Having safe sex with all sexual partners -by using condoms- will reduce the risk of becoming exposed to HPV. Certain types of HPV can cause gynecological cancer or precancerous lesions, which are growths that can develop into cancer. There is also an HPV vaccine that can be administered before girls become sexually active that can protect them from the HPV virus and can help prevent vulval, cervical, and vaginal cancers.
Be smoke-free: Not only does quitting smoking improve your general health, it can also decrease your risk of developing cancer, especially cervical cancer.
Living a healthy lifestyle: eating healthy and regularly exercising can help to prevent you from developing gynecological cancer.
Regular cervical smear tests (Pap tests): Smear tests detect cell changes that may become cervical cancer if left untreated. According to the Cancer Society NZ, having a cervical smear test every three years, from the age of 20, will help prevent cervical cancer. However, the recommended ages for cervical smears and the duration between them can vary from country to country.
Like most cancers, the risk of developing gynecological cancer increases with age.
Are smear tests accessible to all women, including disabled and chronically ill women?
You’d think a procedure that is so important to women’s health would be equally accessible to everyone, right? Unfortunately, this isn’t the case. There are many testimonials online of women who have had bad experiences trying to get a smear test due to being disabled or having chronic illnesses. Age can also be a limiting factor in this, depending on what country you live in.
There are many reasons a woman with chronic illness may struggle to get a smear test. For example, symptoms of disabilities or chronic illnesses may cause difficulties during the procedure. One example is that a woman with Cerebral Palsy may not be able to hold her legs in the requested position. Another example is that a woman who experiences spasms in the lower half of her body may not be able to remain still for the procedure.
It isn’t only symptoms that can make getting smears difficult, however. Smear tests can also be made inaccessible by the professionals conducting them or the equipment (or lack thereof) they have on hand.
If you use a wheelchair, you may find it more difficult to have a smear test than those who don’t. Many women have reported that they have had difficulty getting a smear test because a hoist isn’t available at their clinic. There have even been reports of medical professionals claiming disabled women don’t need smear tests, on the assumption that due to their disabilities they must not be sexually active. This is an especially ridiculous misconception.
It is important that all women are aware of gynecological cancers and their signs and symptoms. That is why Gynecological Cancer Awareness Month is so important. Every time another woman learns about these things, it is a potential life saved. Make sure all your female family members are aware of gynecological cancers and their signs and symptoms. If you or a loved one experiences any of these symptoms, consult your doctor immediately.
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
Before It became apparent that I needed cataract surgery in 2009, I believed that it was only the elderly who developed cataracts. Although the statistics do show that it is mainly people over a certain age are susceptible to developing cataracts they can occur in someone younger due to pre– existing factors.
According to the National Eye Institute, half of all Americans will have experienced a cataract or had replacement surgery. August is Cataract Awareness Month, and today I am here to share my story of cataracts and cataract surgery.
What Is A Cataract & Who Is At Risk?
Cataracts develop on the lens of the eye which is a clear layer behind the pupil and iris. Light is filtered through the lens to the retina which then sends a signal to the brain to form the image of what is being seen. The lens consists mostly of water and protein, over time the protein can begin to bunch together, eventually increasing in size which in turn affects the vision.
There are several different types of cataracts:-
Secondary cataract. Cataracts can form after surgery for other eye problems, such as glaucoma. Cataracts also can develop in people who have other health problems, such as diabetes. Cataracts are sometimes linked to steroid use.
Traumatic cataract. Cataracts can develop after an eye injury, sometimes years later.
Congenital cataract. Some babies are born with cataracts or develop them in childhood, often in both eyes. These cataracts may be so small that they do not affect vision. If they do, the lenses may need to be removed.
Radiation cataract. Cataracts can develop after exposure to some types of radiation
The symptoms or signs of cataracts aren’t only cloudy or blurred vision. More frequent prescription changes can be a sign of a cataract forming. A halo effect when looking at light or light becoming too bright is a common symptom. Double vision, as well as colour appearing more faded than normal and poor night time vision are other signs of cataracts
My Cataract Diagnosis Was Out Of The Blue
In April of 2009, I experienced the worst pain I could have ever imagined. I honestly thought I was going to die. After receiving a misdiagnosis of migraine, we eventually found out that it was in fact angle-closure glaucoma which caused me to be hospitalised to attempt to reduce the pressure in my eye.
I had countless eye drops and IV drips over the course of a few weeks. After 2 weeks of hospital appointments every other day the ophthalmologist in charge of my case decided I required surgery on my right eye.
During one of the many examinations, I was advised that I had a cataract in the eye where the glaucoma was, my vision being poor in that eye to begin with, which meant I wasn’t aware of any changes in my vision.
I was also informed that the beginnings of another cataract were apparent in my left eye. Bear in mind at the time I was 30 years old! I thought I was too young to have cataracts. However, it seems that I was experiencing them at a young age because of the visual impairment I was born with.
Due to my surgery being primarily for glaucoma treatment I was put under general anesthesia, whereas normally cataract surgery is carried out under local anesthesia. Because of the short notice of the surgery being decided we were hanging around the hospital all day until a theatre became available. I was nervous but thankfully my partner was able to stay with me until I was taken to the theatre which was almost 10pm.
The following morning, I woke up a little disoriented and groggy. My eye felt tender and odd. My Consultant came to check on me and the stitches in my eye. It was decided then that due to a cataract being present in the other eye that we would try Laser treatment to make holes in the eye, which in theory would slow down the development of vision issues, ultimately meaning I wouldn’t require more surgery.
Not All Plans Work Out
Some point over the next six months to a year, it became clear that the laser treatment didn’t work, we tried another course of the treatment, which I’m not going to lie. I hated!! That too didn’t work and I began to notice a slight blurring of vision as well as a halo of light.
Surgery for my left eye was planned for January 2010. Thankfully my consultant decided that it would be best for me to go under general anesthesia again. He explained his decision as my being too young to have to remember the process of the surgery.
After The Surgery And The Road To Recovery
Generally, the recovery for cataract surgery is quick. With the procedure being carried out in day surgery, there’s no need to be admitted overnight. Because I was under general anesthesia I was kept in the hospital for a few hours with a lovely eye patch and plastic shield that I had to wear at night in case I scratched my eye in my sleep.
I don’t remember if I had to take any drops after the surgery but I do remember that it was several weeks before I was checked for new glasses! It can normally take 6 weeks for the eye to heal properly which was the reason my ophthalmologist consultant wanted to wait until I got a vision check and new glasses.
A few weeks ended up being a few months without glasses which meant that I was unable to work. This in turn led to me being let go from my job, on the basis of absence as the October following the original Glaucoma diagnosis is when my fibromyalgia symptoms began to appear. Thankfully I was able to finally get a new prescription and new glasses. I found another job and life seemed to return to normal.
Future Problems
In theory, the cataract replacement lens should last me for the rest of my life. There is a possibility of me developing a secondary cataract which is where the new lens’s position can become cloudy. If this were to happen I would receive more laser treatment.
I receive yearly check-ups to make sure that the pressure of my eyes is normal and that there are no changes to my eye heath due to the Glaucoma and my preexisting eye condition.
If you noticed any changes in your vision it is important to get your vision checked as soon as possible! Sadly there is no guaranteed way to prevent cataracts developing, however wearing sunglasses that protect eyes from harmful UV rays is a good place to start.
About The Author
Nicola Ogston is a blogger at nicolajogston.com She writes about chronic illness, disability and parenting. She lives in central Scotland with her husband, son and dog Alba. As well as blogging Nicola volunteers as website coordinator for The UnChargeables..
During this period of spreading breastfeeding awareness, I want to share how breastfeeding while experiencing chronic illness has affected me; I guess you could say I’m not the average mom. Depending on who I asked, I was told that breastfeeding was either easy or difficult. When I gave birth to my first daughter on the 20th of June 2017, I thought I’d take to breastfeeding with ease since I had watched a ton of videos and attended breastfeeding classes. This, however, was not the case.
After my daughter R was born, I struggled with getting her to latch on and instantly felt like a failure. I decided to consult a lactation consultant to come in because I did not want to give up. When she came in, we had to discuss what was going on. We discussed that R was a “lazy baby” and sucked on her wrist throughout my whole pregnancy. We had to used SNS (supplemental nursing system) and a nipple shield to convince her to latch. I cried many times throughout my stay because I had to use the SNS twice with the nipple shield and some formula just on me to get her to taste it another time. I remember feeling bone tired while R was nursing for hours at a time in the hospital, with the nurses coming in and badgering me to feed her more often. During those times it had felt like I had just finished nursing her, yet they would come in and tell me I wasn’t nursing her often enough.
My Experience Adjusting to Breastfeeding
During the first month at home, I was glad it was my summer break and that I did not have to stress about going back to work. I cried many times during the day and night because my fibromyalgia was flaring up and it hurt for R to be nursing for long periods of time. I struggled mentally at this time because of my PPD/A and I was struggling to build a relationship with my daughter. I never have experienced such pure and utter exhaustion like I did with struggling to breastfeed, experiencing a loss of sleep, and my chronic illnesses flaring up. I wanted to give up many times, and hearing some others just tell me to use bottles so that they could feed R didn’t help with my mental state. I also had people tell me not to breastfeed in public and to isolate myself whenever I needed to feed her. I found it was hard to carry her when I needed to walk with my service dog and just trying to find a place to nurse without people tripping on the dog or walking on me was difficult.
My husband has been a huge support,
along with my parents, for both our girls because they will take my girls and
let me sleep in in the morning. In the newborn stage (0-3 months) my girls woke
up often to feed, but it happened around the same time throughout the
night. No longer experiencing this interruption of sleep predictability helped
me to cope and not be as grumpy or frustrated with my sleep being
interrupted.
The Stigma that Surrounds Breastfeeding
Breastfeeding can be difficult for anyone, not just people with chronic illnesses. There is a stigma with breastfeeding that goes around along with a lot of misinformation. Unfortunately, there is a huge push for anyone who is breastfeeding to go and nurse in another room, bathroom, changing room, etc… There seems to be a huge push for formula and bottle feeding because it’s “more convenient” and allows others to feed the baby to “give mom a break”. There are even suggestions to just pump and bottle feed, but that is not an easier option because every time that the baby feeds, mom still needs to get up and pump, then take care of the pump parts and put the milk in storage. There’s a lot of work no matter what, and it can be a struggle.
Medication and Breastfeeding
Having chronic illnesses and making the choice to breastfeed will limit your options concerning medication. Even though you are not pregnant, you still have some limitations or weird changes of limitations on medication. After having my second daughter W, my body went into a flare with lupus and fibromyalgia. I discussed with my doctor what we could do, and he put me on a new medication that would not affect my daughter since I am still breastfeeding. I had to go back to my doctor this past week because the medication was working, but not at a therapeutic level.
He decided to up my medication again by 0.5mg (small increases as needed because everybody is different) and then discussed that I am still inflamed in my ears but the fluid in my inner ears was finally gone. We had initially wanted to put me on gabapentin, however, after my doctor went and looked up to see if it would be safe, he and I decided that we could not take the risk. The medication I was put on instead was one that claimed a minimal amount goes through the milk to the baby. We would have to monitor W as well as myself to make sure no harm or side effects were occurring.
It is a “safe” medication, but in the “if the benefits outweigh the risks” manner. I was slightly devastated because my pain is coming to a point where I am losing more sleep than I already was to begin with. Pain can also affect your libido, patience level, etc… We have now gotten to where we need to focus on herbs if possible, to help with my nerves since most medications for pain are not recommended for long periods of time while breastfeeding. If my pain gets worse or even more unmanageable then we will revisit and evaluate what we need to do as our next step.
For now, I am going to stick with breastfeeding because it is beneficial to my daughter. My daughters both do not respond very well to formula and I would have to special order one from out of the country, which my insurance will not cover. When I consider the cost, benefit and time (easier/quicker to breastfeed than prepare a bottle), I am keeping everything in mind and staying in contact with my doctor to make sure I am not sacrificing too much of my physical, mental, emotional, and spiritual health. My experience is going to be different from anyone else’s experience, and I am always a “fed is best” advocate. I will never advise someone to compromise their own health when their child needs their parents alive more than anything.
My pain story goes back many years. I remember suffering widespread body pain from my teen years and on – I’m 57 now. Mostly, it was mild for many years, but painful enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty transient lifestyle and it just wasn’t at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my wonderful husband.
Contributing Factors
In 1991, I was in a single vehicle car accident where I spun out on black ice. I took out the driver’s window with my head. Fortunately, I didn’t suffer any broken bones, but I did have a lot of soft tissue damage. I also suffered a huge fibromyalgia flare-up, and was in pain for months, despite going for physiotherapy. This was when I received my official fibromyalgia diagnosis.
Something else that has contributed to my fibro pain is the number of surgeries I’ve had in my life. I underwent stomach surgery in 2004 for severe gastric reflux disease and ended up with nerve damage. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my left ovary, then my gallbladder and then my right ovary – all happening within a 6-month time frame. Talk about body trauma!
My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years. All of these surgeries caused my fibro to flare-up repeatedly until I was in what felt like a permanent flare.
And if that weren’t enough, I also live with Osteoarthritis, Myofascial Pain, Chronic Fatigue Syndrome, and several other health issues. These all combine to make my fibro pain unbearable at times.
I’ve been lucky in that I’ve had good family doctors in both cities I’ve lived in (Calgary, AB and now Langford, BC). I was referred to and accepted into outpatient treatment at the Chronic Pain Centre while living in Calgary, and there, I worked with a team including doctors, physiotherapists, a psychologist, and others.
Treatments for Fibro
We tried several types of injections for the Fibro trigger points, including Botox, but nothing helped. My fibromyalgia was also treated by putting me on Lyrica first and then Cymbalta, plus a narcotic called OxyNeo (oxycodone). This is the treatment plan I follow to this day.
I also use Mindful Meditation, Music Therapy, Heat and Cold, Epsom Salt baths, Magnesium rubs, and I’ve tried Flotation Tank Therapy as well. Everybody is different in what works for them and these are all things I’ve found that help me especially during a flare-up.
My faith as a Christ follower is huge as well, and prayer plays a big part in my life when it comes to pain and managing it. It also helps to have a supportive partner. My husband does way more than his fair share around the house when I’m not able to pitch in with chores and stuff. He understands that I have bad days and is always available for sympathy and a hug.
Daily Life
I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift positions to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my fibro and arthritis pain said it’s among the worst he’s ever seen. I feel like my muscles are encased in concrete as they constantly feel heavy and aching and hard to move.
I’m never pain-free, I’m perpetually exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.
My body is hypersensitive to many things, including the feeling of labels in clothing, loud noise, smells….you name it. I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms, and chest. So embarrassing and uncomfortable!
For a period of time, I attended group classes at the Victoria Pain Clinic for relaxation, diet, exercise, etc. and it did help to learn other ways to focus and cope. It also helped to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away.
I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me.
Hip Replacement Surgery
In 2017, I had my right hip replaced because my osteoarthritis was so bad, and there was an impingement as well, which meant the head of the femur wasn’t sitting in the hip socket properly. The surgery took a couple of hours to do, and I was in the hospital for just 2 days before I went home. The nurses had me up and on my feet, the day after surgery and there was actually little pain.
My recovery took approximately 6 months and while I’m still using a cane, it’s because I have knee problems on the same side, not because of the hip. My hip feels great and I’m so pleased with the surgery. My left hip will need to be replaced as well, but hopefully not for another year or so. And during the period right after the surgery, I actually had only a minor fibro flare, partly due to the medications I was taking and partly due to the continual icing of the joint – it helped to keep things to a minimum.
There Is Always Hope
I’ve struggled with a lot of health issues, but my motto is “there is always hope”. It’s the name of my blog as well, where I write about Chronic Pain and Invisible Illness. I keep a positive outlook on life and I know that despite the fact there’s a lot of negative things going on for me health-wise, it could be a whole lot worse as well. I feel blessed overall and I never take things for granted.
About the Author:
Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.
