What Happens When No One Believes You? A Rare Disease Story of Survival and Self-Advocacy

Written by: Angela Davis

I almost died at birth and had to wear metal leg braces and shoes for the first two years of my life in attempt to straighten my inward facing rigid legs and feet. Yes, everyone called them my “Forrest Gump legs” though I never could dance, move or run like him! My parents felt shame and disappointment at what was a rare neuromuscular disease disability, but not identified or understood by the doctors then. The reality of an adult rare disease patient!

Rare was not even a concept to them. As a 2-year-old, I was in and out of hospital tents with what doctors thought was scarlet fever and with other bouts of dangerous infections. My parents discarded all pictures of me with my leg and feet braces and discarded me as well. My physical disability was something to hide and not to talk about. That was drummed into me.

As my body attempted to right itself, I realized I had to fight for my own medical attention and my own life. I remember having to beg my parents to take me to the ER or to a doctor when I was horribly ill, on the floor, too sick and stiff to push myself up. It took 22 years until the UCLA Neuromuscular Clinic diagnosed a severe variation of stiff-person syndrome (SPS) with the progression of my disease. The neurologist believed I had a form of self-correcting cerebral palsy at birth and it evolved into a type of vehement SPS.

My husband and I fought furiously for access to that clinic and to afford to stay in southern California until I obtained a diagnosis with a rare neuromuscular disease specialist at long last. With my husband’s rare love and help, I could keep fighting for myself, especially after an exceptional marriage of 27 years this July.

His unconditional support encouraged me to battle on for my own well-being and still does. I could advance in medical attention with help from our friends and, most of all, because I mattered to someone so much, with my husband’s profound true love. I was and am very fortunate for both.

I discovered mejo three years ago online! I  organized all of my essential rare medical treatment along with imaging, my most pressing current symptoms, and my specialists’ notes and after visit summaries. I realized even though the mejo app was created for parents who fight for their children with rare disease, the mejo organizational model and electronic sharing with my doctors function was a lifesaver for me as well! 

Anything different doctors’ offices had recorded incorrectly would have placed me in major peril. However, with mejo, every specialist I saw had all of the same accurate medical facts about my SPS journey and its progression over what is now nearly 30 years of essential info stored efficiently on my mejo app!

SPS is insidious and utterly debilitating. I use a rollator, a wheelchair, and, for the most part, I am homebound. This rare neuromuscular disease is too often ignored, neglected, not talked about. I’ve had to educate all of my doctors all about SPS, and mejo at my fingertips made it so much easier and less stressful for me.

I admire and adore relentless rare disease parents who sacrifice anything and battle endlessly to save their children’s lives, abilities, to bring them relief, treatments, the reality of cures. I fight alongside these extraordinary parents and advocate for all rare disease patients, no matter our ages. 

I discovered early in life that I had to fight for myself and for all rare disease patients with all of my might. Otherwise, no rare medical research, knowledge, treatments or cures would be or will be available to us. Neither would any compassion.

I discovered how less isolated I felt when I got to know other rare disease patients and parents. We all need mutual compassion, care and consideration. We achieve help and medical treatment for all of us who suffer ongoing testing, procedures, surgeries, experimental treatments – the harm of uncaring doctors, the joy of knowledgeable, kind doctors. 

Our unity is truly our most potent force for ultimate healing, for demanding not only the medical community’s attention, but also the attention of the general public, of our friends, of our families. Adults like me who endure rare disease were once rare disease babies. 

Many of us know what it is like to be medically neglected, brushed off, misdiagnosed, even abandoned by those who once promised to be closest to you. We fight alongside rare disease parent advocates with our lives of knowledge, experience and advocacy work on behalf of the entire community.

We lose exceptional adult rare disease warriors who were ill since childhood as they pass away. We all know they and our children deserve infinitely better. Thanks to the ingenuity of mejo, our medical attention and understanding of our medical needs is possible in such a patient-centric, user friendly way!

Our greatest successes, breakthroughs in rare disease medical attention, manifested thanks to the mutual kindness and the labor of love of advocacy between parents who fight for their children with rare disease, rare disease patients and rare disease specialists. Thanks to parent advocate inventions like mejo, a well-honed communication tool encourages the best help and provider relationships!

We amplify the astonishing courage we all carry and exhibit every day. Mejo soothes and abates the fear we face in the grip of rare disease when we maintain our friendships, our strengths and our networks. I feel so fortunate to utilize vital technologies like mejo! Mejo empowers all rare patient warriors who fight on within the complexity of medical care all over the country! 

Angela Davis

After 23 years of fighting for a rare disease diagnosis, Angela was diagnosed with a rare variation of Stiff Person Syndrome. Her work has been featured by Global Genes, NORD, Patient Worthy, and the House of Representatives.