Radical (But Easy) Ways Able-Bodied People Can Help Rare Disease Warriors


As a rare neuromuscular disease warrior who fights the rarest form of aggressive Stiff-person syndrome (SPS) already an insidious estimated one-in-1 million disease, I must travel from Connecticut to Baltimore to see an expert neuro specialist who tries to treat me. He tries to spare me the ongoing seizing, rigidity, and acute pain that threatens my ability to breathe as it squeezes my ribcage and ends my ability to walk. My disease has progressed over 21 years, most of that time undiagnosed as I battled for access to a rare disease doctor, and now I need a wheelchair. I fight for every day.

Sounds impossible to help the often forgotten, mocked, and denigrated disabled rare disease patients like me? It’s not. It’s easy. If I can do it through my daily agony, I know healthy, able-bodied people can help, too. I see folks on social media right now who ask the same question every day: “Who should I donate to so I can help people left behind?” Please do not wait for a plea or cry for help. Here’s a radical answer: Help your rare disease friends by embracing them in your life. This simply means ask how they are doing, ask what they need, send them cards, include them in social invitations, do not blow them off.

Fight alongside your rare disease friends by signing petitions, calling or tweeting your Senators (both just take a few minutes), to request the passage of the 21st Century Cures Act which will die if the Senate does not pass it by the end of this year as promised. Encourage your congressional representatives to push forward medical innovation, treatment, and cures for rare disease. You can simply retweet a message from your rare disease friends’ Twitter accounts. Just a click and you’ve kept up momentum to save our lives.

One more radical answer to the question: “How do I help the mocked, the disabled rare disease warriors?” Simple. Remember us. Remember your rare disease friends and loved ones to whom you can give directly and literally change their lives and the lives of their families for the better with your help. My husband and I are profoundly grateful for our extraordinary friends who have given so thoughtfully and compassionately to us. The war never ends with incurable rare neuromuscular disease. It keeps us poor, just as rare disease does to the vast majority of fighting families. Stand by us. Help us win the fight.

Remember: no lectures, advice, judgment, or condescension along with your help, just give it out of pure, radical devotion to your rare disease friends. That is how you change medical injustice and begin a movement for inclusive, wise, and true change for the disabled rare disease community. You will help us continue to fight and win effective, affordable treatment and cures. Help now. Do not delay. The time to save our lives is now. This is our chance, even if you just click “retweet” on Twitter! I thank you with all of my heart.

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