Rare Disease patients tend to be tremendously aware of every aspect of our lives; our under-treated diseases, our lack of social support and our own coping mechanisms.
We need more able-bodied people to help us now and in simple ways. We need more people to be mindful in what they assume and say. For example, rare diseases are not the result of life choices, divine judgment, sad luck, or karma. Medical science reveals a combination external pathogens, pollution, and genetics cause rare disease.
I am lucky enough to have a dear friend from high school who is now a rare disease researcher, protest for me and the desperate need for rare disease research funding during the March For Science. She ventured out into the blazing sun with my photo and written demands to fund the science of rare disease research. So many fellow marchers saw the poster and were then mindful about the most vital needs of the medical scientific community.
Since my incurable rare neuromuscular disease, the rarest form of Stiff Person Syndrome, confines me to a wheelchair, I once more so deeply appreciated my friends marching for me; the friends I can count on one hand during my 22 year fight for my rare diagnosis, medical help, and relief from unrelenting seizures and acute pain.
Their marching for me is their way of being actively mindful of not only my battle but also the rare disease battles of 30 million Americans who are infants, children, young adults, and adults like me.
For us rare disease warriors, your practical help is the most greatly needed gift. Instead of just wishing us luck, “God’s mercy,” or kisses from afar, you can spare seconds to call your Senators and representatives to fight for the increase of the shameful nearly non-existent federal rare disease research funding. You can share with them our individual stories and requests, how our struggles for life may directly touch yours and theirs. You also can sign pre-filled petitions to save medical science and rare disease research in order to save human lives in a matter of seconds in addition to your quick call. We are accustomed to doing all of our own advocacy work in the midst of being dangerously ill, and I am one of those patient advocates who believes this is just wrong.
We should not be alone in this fight. Our healthy loved ones should and often do fight alongside us, if we are fortunate enough to have their support.
We are too accustomed to the absence of friends and biological family because they cannot handle our rare diseases, or they truly judge us for being sick like my own family who cast me off, like my own mother repeatedly calling me “useless” because of my then still undiagnosed progressing rare disease when I was 19. So many long-time close friends I couldn’t imagine vanishing pulled the same disappearing act. These examples show the absence of mindfulness, a refusal to contemplate what rare disease steals from your loved one. They discarded me because of my illness, and I battled on my own until I met my extraordinary husband of 19 years.
We held fundraisers to relocate across the country and back for my rare diagnosis and for the relief of effective treatment. I was so grateful many of my junior high, high school, and college friends donated for my medical help. Their donations made my rare neuromuscular diagnosis possible and identified targeted treatments within my grasp despite their inhumane cost. That incredible generosity is life-saving. They were mindful of my suffering and of what my husband and I suffer. They gave us hope and a reminder that we were loved, which in turn made us even more mindful of the urgent needs of the rare disease community.
Rare disease patients and their families often have so little financial support because of the outrageous expense of medical treatments and specialty appointments we must spend hours travelling to access, not to mention the expense of fighting for health insurance coverage of our procedures, surgeries, and battles for home care assistance, which our insurance refuses to cover due to cost. We especially experience a mindless lack of kindness, of emotional support and friendship since we cannot go out to parties, social gatherings, vacations for fun in order to get out and create new or maintain friendships. I believe true friends remain mindful of you and understand you cannot attend outings to “prove” your interest in leisure.
True friends are always mindful of your rare disease and offer to come visit you, take you and push your wheelchair, email you, call you, fight for you; even march for your right to live a healthy existence or just to live.
To my dear high school friend pictured in this story who was about to head out and march for me in the March for Science, specifically for rare disease research funding, for her drive to secure funds for rare disease research that goes beyond an initial diagnosis and actually pinpoints effective treatments and cures, I thank you with my heart for pushing forward for and with me; for refusing to abandon your mindfulness of my rare disease fight; and for fighting for the 30 million Americans who endure rare disease with magnificent courage. We remain mindful not to give up on ourselves, though often those we trusted the most may have tempted us to do so. Even our own government tempts us into a falsehood that we are simply pre-existing “conditions” that once again can be discarded. Well, thanks to my own persistence, to the strength of my husband and our exceptional friends, we reject this falsehood.
Rare disease warriors will continue to advocate, to recruit advocates, to fight for our vital treatments and procedures, and to live the very best lives we can enjoy. We remain forever dedicated to our fierce tenacity and to the boldness we share with the astonishing friends who care about us without ceasing.