What Cerebral palsy awareness month means to me (March 2020)

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.

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.

I'm not fighting for a cure for Cerebral palsy, I'm fighting for awareness

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.

September 25, 2019September 25, 2019

What is Ataxia? (International Ataxia Awareness Day)

The International Ataxia Awareness Day is on the 25^th 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:

Change in speech, e.g. slurring
Difficulty swallowing
Involuntary eye movements
Difficulty walking, unsteady gait
Headaches and migraines
Poor coordination, resulting in difficulty with fine motor skills, such as eating, buttoning your shirt, or writing.

Experiencing headaches and migraines as a symptom of Ataxia

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.

Using a walking aid or mobility aid when experiencing the symptoms of Ataxia.

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.

July 29, 2019July 21, 2019

Why I Write About Cerebral Palsy (and Why It’s Important)

Why I Write About Cerebral Palsy (And Why It Matters)

What Is Cerebral Palsy?

Cerebral Palsy (CP) is a group of permanent movement disorders that appear in early childhood. Signs and symptoms vary among people and over time. It is the most common motor disability in childhood.

Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, swallowing, and speaking.

Read more about why awareness is so important.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” –Christopher Reeve

Writing

Tap tap tap tap with each letter I press on the keyboard becomes me telling my story of 24 years of life experiences from my point of view.

Over the years I get asked this question – what made you decide to want to write about your Spastic Cerebral palsy?

I write about my Cerebral Palsy because I want to bring awareness to the positive side of having the condition, but I also want to bring awareness to the raw truth about Cerebral Palsy.

In all seriousness, I write about my condition to end the stigmas about Cerebral Palsy and the condition itself. One of the stigmas I strongly dislike is that people with Cerebral Palsy can’t live an average life and are not able to get jobs or to go to college.

Why I Write About Cerebral Palsy (and Why It's Important)

That’s why I write about my life whether it be through my blogs, books or poetry. I always find a way to bring awareness to a condition that is often thrown under the rug although 17 million people have Cerebral Palsy, unfortunately.

Realistically Speaking

Cerebral Palsy isn’t spoken about much as a writer and as a person who speaks out on the deep topic, I feel that it’s important for others to get educated about disabilities and the stereotypes we have to face on a day to day basis in our society.

When I write about my condition it makes feel as if I could express myself without having to be cautious about the situation and how people perceive me, since I sometimes mispronounce words and stutter at times when I am talking. With writing, I don’t have to worry about being judged about my Cerebral Palsy or the way I stumble with some of my words. I can just be myself and my message comes across clearly and I gain the confidence I need to continue stomping on Cerebral Palsy

When I am writing it feels like I have the whole world in my hands and for a split second, I forget I have Cerebral Palsy. I use writing as a way to cope when I’m feeling down about my CP. I just open my laptop and start writing from my heart about whenever it is I’m going through, and I’m reminded that I will be okay and I have to keep on pushing through.

About The Author

January 25, 2018November 22, 2018

Rare Disease Spotlight- Janelle’s Battle with Mitochondrial Disease

Mitochondria are the energy makers in our body. We all learned in high school that the mitochondria are the “power houses’ of the cell. But sometimes, genetic mutations occur in these “power houses” and cause chronic disorders that occur when the mitochondria fails to produce enough energy for the body to work appropriately.

Mitochondrial disease can affect the cells of the brain, nerves, muscles, kidneys, heart, liver, eyes, ears or pancreas. Mitochondrial diseases include autism, Parkinson’s disease, Alzheimer’s disease, muscular dystrophy, Lou Gehrig’s disease, diabetes, and cancer. One in 5,000 individuals has a mitochondrial disease. Each year, about 1,000 to 4,000 children in the United States are born with a mitochondrial disease. – (Source Cleveland Clinic)

This Janelle’s story.

She has bravely fought mitochondrial disease for 27 years.

Janelle was born with genetic mitochondrial disease. She spent a great deal of her young life in the hospital. Mitochondrial disease can impact people in various, different ways. Janelle’s form of this disease vastly impacts her muscles and her gastric function. She was unable to eat solid food until the age of three. Since her body does not function properly, she has to rely on a broviac tube and port to give her life sustaining nutrients and medication. She struggles with neuropathy, cyclic vomiting, fatigue and malabsorption issues. Her gastric function is so compromised that she frequently becomes dehydrated and malnourished. The veins in her body literally collapse from the lack of necessary nutrients and hydration. The only solid foods she can eat are potatoes. Janelle’s diet is mainly comprised of chicken broth.

Janelle is sharing her story because she wants people to know that Mitochondrial disease may be invisible but it is very real. We have lost more children from mitochondrial disease than we have to childhood cancer. Rare disease awareness is necessary.

Symptoms of mitochondrial disease-

(Source- Cleveland Clinic)

Poor growth
Muscle weakness, muscle pain, low muscle tone, exercise intolerance
Vision and/or hearing problems
Learning disabilities, delays in development, mental retardation
Autism, autism-like features
Heart, liver or kidney diseases
Gastrointestinal disorders, swallowing difficulties, diarrhea or constipation, unexplained vomiting, cramping, reflux
Diabetes
Increased risk of infection
Neurological problems, seizures, migraines, strokes
Movement disorders
Thyroid problems
Respiratory problems
Lactic acidosis
Dementia

(These are not all inclusive, every person may not have every symptom. Mitochondrial disease has many different types, forms and origins)

Janelle may fight a difficult battle against this disease, but she is still determined to enjoy her life. She finds happiness by spending time with her family and especially enjoys playing with her nieces and nephews. She also enjoys cheerleading and tries to stay as active as her health allows. She has many friends and the children’s book, The Shivering Sunbeam was dedicated her. She is passionate about helping others realize that even though they may be battling a tough disease, they can still be happy.

I am going to stay positive even though it’s been very rough and difficult. I have to fight for my life. I am not going to give up on hope or faith. Janelle says.

If you or someone you know is battling a rare disease, please know you are not alone. The UnChargeables are here to support you. We will never stop advocating for every chronic illness patient, even the rare ones!

Rare disease awareness is necessary because you never know who may be battling an unknown health issue. Rare doesn’t mean impossible.

You are not alone! Keep fighting.

Would you like to share your rare disease story? Contact us!