Our Journey Of Overcoming Challenges With Rare Diseases Using Acceptance and Love

Our Journey Of Overcoming Challenges With Rare Diseases Using Acceptance and Love

Knowing you are not alone as you face the challenges of a chronic illness can make accepting those challenges a little easier. My brother, Logan Madsen, and I both have two rare genetic diseases, making life rather interesting.

We are 2 of only 30 people in the world with Miller syndrome. Our second rare disease is primary ciliary dyskinesia, a life threatening lung disease. The odds of both of us getting both diseases is 1 in 10 billion. We also have autism.

Miller Syndrome Presents Opportunities for Self-Love

Miller syndrome affects how our bones and muscles form, causing us to look different. It involves most areas of our bodies including our face, ears, hearing, arms, wrists, hands, legs, ankles, and feet. We were born with a cleft palette, which is a hole in the roof of the mouth.

Our arms are short below the elbow, with bent wrists, small hands, and three bent fingers and a thumb on each hand. Finding winter gloves that will fit us is quite an undertaking. Our ankles pronate and we have four toes on each foot.

Miller  syndrome group

Having limited shoulder rotation, limited elbow extension, short arms, no wrist rotation, small hands, bent fingers, and hardly any dexterity beyond a pincher grasp makes every task more challenging. Tasks like using the cell phone, tying shoes, writings, cutting food, typing on the computer, and scratching an itch takes extra time and energy.

Sometimes we have to be creative. Wall corners, tennis balls, and push pencils are great for scratching itches and massaging muscles we can’t reach.

Picking up a glass of water takes a few steps to ensure I don’t drop the glass. Repeating this many times a day adds up. I have learned a lot of patience, self-awareness, and self-love from living with Miller syndrome.

Logan and I are hearing impaired and we wear hearing aids. We tape the aids to our head with double sided sticky tape because our ears are cup shaped and can’t hold them. The summer heat produces a unusual fashion accessory when we sweat and the aid dangles precariously from our ears.

Once when Logan and I were young, we got in a fight while we were playing near the plastic kiddie pool that was filled with water. Logan took a swipe at me and accidentally hooked my dangling aid with his bent fingers, popping it out of my ear and propelling it directly into the pool. Score? Thankfully, it still worked once it dried out. Between the two of us, we have had 50 surgeries to help correct some of the malformations.

Helping Others Find Answers Brings Peace

In 2010, we became the first family in the world to have our entire genome sequenced. Okay, being first is cool. This is when scientists discovered the gene mutation for Miller syndrome. If both parents are carry the mutation, there is a 25 percent chance the child will be affected. Our genome sequencing also revealed that we had the gene mutation for our lung disease, primary ciliary dyskinesia.

By participating in the study, we helped geneticists find answers to questions. We also helped others, who can now get tested for Miller syndrome. Learning the cause of Miller syndrome and our lung disease brought us peace to finally know the answers.

Chronic Illness Encourages Letting Go of Expectations

Primary ciliary dyskinesia is an impairment in the little hair-like structures called cilia that help move mucus out of the lungs. With the cilia not working, Logan and I have a chronic cough and we get lung inflections that cause progressive damage and require antibiotics.

Lung therapy treatments help clear the mucus out and prevent infections. We use a nebulizer to inhale medicines and then apply airway clearance techniques to cough up the mucus.

Heather nebulizing

As my lung disease progressed, using the nebulizer twice a day has become essential. Each lung therapy treatment takes an hour. In order to accept this imposition in my day, I had to stop resisting and surrender to doing this self-care. Letting go of old expectations of what my day was supposed to be like gave me the freedom to feel more joy.

When I noticed I coughed less, had fewer infections, and fewer hospital stays from using the nebulizer, I was grateful. The idea of missing a treatment now feels unthinkable. The silver lining? I get to watch TV during therapy, yay Netflix.

You Are Not Alone

Growing up with a sibling who looks like you, when no one else does, was indispensable in the formation of our self identities.

People would ask Logan and me if we were twins (they meant identical), even though I looked like a girl, was quite a bit taller, and 3 years older. It just didn’t compute to them as they had never seen anything like us. Since we looked the same with our syndrome, sometimes we even dressed the same to affirm our likeness and mess with people. Good times.

Growing up with miller syndrome

I was grateful for a sidekick who experienced similar physical challenges, lung problems, hospital visits, and surgeries. Logan struggled with having a sister who represented his own differences and did his best to separate from them, most of the time.

Though we responded differently to each other, we both knew we were not alone. We could understand each other’s unique challenges and life paths we were on.

Our journeys have taken us far. We are both public speakers and I am a writer. Logan is an amazing fine artist and the star of his award winning documentary, Logan Syndrome, which I will tell you about later.

Seeing Beyond Difficulties Releases Resistance

Chronic illness made me curious about what daily life was like for others with challenges and how they felt. This compelled me to read  books and memoirs from a young age. I graduated college with a B.S. degree in Psychology, though promptly became a writer after realizing the odds of finding traditional work that fit me had worse odds then my birth. I was destined to write.

Living with chronic illness has taught me to see beyond the difficulty that is causing resistance and negative feelings until I connect with something that makes me feel centered again.

Appreciating Different Perspectives Grow Joy and Love

rare disease writer

Using poetic prose, I write about the beauty of life’s expressions and their relationships to me. Seeing different perspectives about the details in life brings me joy and fills me with love. In turn, I feel connected to life and find meaning in my challenges with chronic illness, no longer feeling alone. Everything exists in relationship to something else.

When you find the relationships and beauty that raise your sense of well being, this helps ease the struggle of living with chronic illness. Seeing the beauty in everything increases my gratitude for all that I do have.

When I am unable to physically reach for an object because of my short arms or reach a goal because of fatigue and illness, I can use my mind to reach into myself and learn more about what makes me who I am.

Helping you see life a little differently is my passion. When I am coughing a lot, I look out my window and watch the trees dance in the wind like visual music. Seeing the trees flexibility and groundedness reminds me to do the same and I release my tension. As the tree surrenders to the wind, I surrender to the moment. This calms me and I feel more at peace and accepting of what is happening.

Finding Your Passion Builds Meaning

our story about miller syndrome

My brother also found a passion that helps him live with the rare diseases and disabilities that we share. From the age of 4, Logan loved to draw. He drew all the time and got so good that he sold drawings to our mom’s customers when she cut their hair. Drawing made Logan feel good because he felt normal.

When Logan was in his early 20s and depressed, he began to paint, creating vivid photo realistic art. As an extraordinary self-taught artist, he paints about the details of life and his disabilities. His first series called Nature’s in the Details were closeups of flowers. Painting these made him happy.

Mille syndrome

After Logan’s art show in 2006, he decided to paint details about Miller syndrome, his lung disease, autism, and chronic pain. He titled the series Syndrome Psychology. It was the first time he addressed his differences publicly, to help increase people’s awareness and comfort about differences.

His bold and provocative paintings inspire people and show how we are more alike than different on the inside. Even though painting causes him severe pain due to Miller syndrome, he continues. He said, “Painting keeps me alive.”

Award-Winning Documentary About Hope and the Strength of the Human Spirit

Logan dreamed of communicating his insights and feelings about what it’s like being him, in a broader medium than just paint. He wanted to connect more with others and help inspire people to overcome their own challenges.

Logan syndrome dvd

He and his friend, Nathan Meier, a filmmaker and artist, produced a documentary about Logan called Logan’s Syndrome. The film won Best Feature Documentary at the Carmel Film Festivaland became available worldwide to rent or purchase on Oct. 2, 2018.

Logan’s Syndrome follows Logan in his daily challenges and successes with Miller syndrome, primary ciliary dyskinesia, and autism, as he paints his Syndrome Psychology series to show in a local gallery art exhibit. Along the way, Logan shares his unique journey with wit and raw honesty — from our parents divorce and being raised by a single mom, to his search for romantic love, and his struggle to accept his conditions.

Unconditional Love Inspires Acceptance And Fortitude

Logans syndrome story

Our mom’s unconditional love and support made it possible for Logan and me to be successful in our independence and life purpose. She protected and built our self-esteem, encouraged us to do our best, and was always there for us.

It only took a day after my birth for my mom to realize I was pretty awesome. The doctors sentenced me to the ICU immediately after I was born. She thought she didn’t want to keep me, but then her unconditional love took over when she held me for the first time and admired me in her arms. We’ve been inseparable ever since, at least, until she gently kicked me out the nest, er house, when I was 22 and told me it was time for me to be independent.

Logan moved out as soon as he turned 18, happy to be away from Mom and his pseudo twin. I watched the dust trail and dabbed my eyes with a tissue. Now he and I live in separate apartments in the same complex and enjoy each other’s company, at the distance of once per week.

Use Your Challenges and Lessons Learned to Inspire Others

Author eight fingers eight toes

My mom didn’t want all that she has learned  from her experiences with Logan and me to disappear with her when she dies. She wrote a book called Eight Fingers and Eight Toes: Accepting Life’s Challenges, by Debbie Jorde. It is about her raising us as a single mother and the life lessons she has learned. Included are her challenges with divorce, an eating disorder, and poverty. Some of my writings are in the book.

While my mom was editing her book in 2009, she was diagnosed with multiple sclerosis. My mom has always been the optimist and taught us how to accept challenges. With Logan and me by her side, already connoisseurs of chronic illness and disabilities, it was a little easier for her to accept her new reality.

Sharing Happiness and Acceptance With Others Creates Purpose

The challenges of Miller Syndrome, primary ciliary dyskinesia, and autism have motivated our family to share our experiences. We like to help others understand that while you are overcoming challenges and dealing with chronic illness, you are not alone and can still find happiness and acceptance during difficult times.

My mom created a website about overcoming challenges called Debbiejorde.com. Also found there is my blog about my insights and what my challenges have taught me about myself and other people. You can watch Logan’s movie trailer on the website and purchase the film. The documentary is available on Amazon, iTunes, Google Play, Youtube, Microsoft store, Vudu, Xbox, Walmart, and Overdrive.

Heather Madsen - Bio

Heather Madsen writes and speaks on accepting and overcoming challenges, telling her story in a raw, sensory way that shows her unique perspective about beauty, love, and gratitude. Born with two rare, severe physical conditions and autism, She’s passionate about helping others replace suffering with unconditional self-love.

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