The Patients We Can't Forget to Support on Rare Disease Day


We rare disease warriors know Rare Disease Day is our global opportunity to raise awareness about what it is to live rare, to fight for treatments, cures, and the funding of rare disease medical research. We know this day is intended to educate the general public in the hope that more people will become our allies and advocates. But what about rare disease patients who are too ill to type up their stories to tell us what they are forced to endure and how unfathomable their daily suffering proves, especially when they do not have family or close friends to help them advocate?

These severely rare patients are often alone, discarded by family and friends, and left out of advocacy efforts and organizations because they cannot physically write up and submit their battles to those who need to fight for them. They may not possess the finances and resources to establish their own advocacy networks or organizations. They may force any energy they have to crawl to the bathroom to attempt to bathe or to try to retrieve some food from a fridge, if their specialist appointments and trial meds have not already taken all of their money, and because their rare diseases have debilitated their bodies progressively, with no cure and no relief in sight. We all know what this rare fight is like, and so we all must stick together.

We need to remember and include the severe rare adult and literally orphaned children who do not have the privilege of constant support and social media exposure in our Rare Disease Day efforts. Now more than ever, with more and more medical benefits and assistance being eliminated for all rare disease patients especially, we need unity in the rare disease community. We all suffer tremendously. We all know how it feels to be forgotten, misunderstood, and abandoned because of cruelty and ignorance of government, of the world of medicine, of our own families, and of society at large. Let’s not inflict this anguish upon one another in the rare disease community. Let us stress the vitality of unity among all of us rare disease patients and advocates.

I speak from experience, and I write when my muscles will allow it in spite of blindingly painful constant seizure. I write because I know I am not the only rare neuromuscular disease patient in this situation. I write because we must educate everyone about all aspects of rare disease and how we must all fight for our lives. Many of us, like me, have to fight every day just to access and accomplish basic needs since we are denied assistance and, due to the atrocious expense of attempted rare disease treatments, cannot afford private home care or nursing, and many of us have been discarded by our families because we became ill and needed help.

I am so fortunate to have the unconditional support of my husband, but his demanding job frequently keeps him at work rather than at home. We do our maximum best to plan ahead and make everything easier for me alone at home despite the total debilitation of my body and my severely limited self-care abilities. I am so grateful I can type up this story today. I am so grateful I am a Rare Disease on The Mighty contributor. I am so grateful for this moment to be able to type up these words and assert a plea to the rare disease community: please continue to fight alongside all of us, all of us who are too often unable to access much needed resources, medical help, and social media spotlights.

Please resist the voices of division that breed an odd competition of who does and does not have it “worse.” Why compete about who deserves more attention because they may or may not be sick enough to deserve it based on assumptions from within our own community? We all live similar rare battles, so let’s maintain the courage to fight them together! In the gifts of our physical abilities to write, travel, photograph, and video ourselves for rare disease advocacy, let us remember the rare disease warriors who do not possess enough health, help, or resources to do the same. Please speak out for these patients who are us, too!

Many of us live with no “energy spoons” every single day due to our specific diseases and the complete lack of medical relief. We often, therefore, are left out of the conversation and are overlooked. We may live without the praise and admiration for our strength and superhuman endurance. We have invaluable perspectives and experiences we can contribute for the improvement of rare disease for all of us! In your online and other public forums of rare disease advocacy, please remember us and remember you are in a special position for all of us! Continue your work for and with all of us.

This is why I push and hurl myself well beyond my physical limits, no matter the physical price I pay, to fight alongside and for the rare disease adult and child warriors whose voices are not represented, whose diseases and tenacity are too often forgotten. It is not “to get published just for attention,” as I recently overheard a former “friend” say.

It is to seize the privilege to increase the chances for all rare disease patients, but particularly for those who cannot physically speak out themselves, a community to which I belong most of the time. We are all fighting for our lives, for the funding and necessity of life-saving rare disease research, for the dream of treatments and cures to manifest as realities. Let our community remain united for research, cures, and compassion on February 28, this Rare Disease Day, and on every single day! This unity ensures our communal and individual medical victories. We fight for every child and adult who must live with the told and untold agonies of rare diseases. We need the kindness and support of one another every day.

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