WARSAW, Ind. (WFFT) - Katherine Alderfer celebrated her 14th birthday in quarantine with her twin sister, Caroline, on Monday, May 18.
But quarantine isn’t a new concept for Katherine.
Her autoimmune disease has restricted her from playing outside with friends for the past decade.
Kristine Alderfer, Katherine’s mother, says, "It was about ten years ago this weekend when we were having a birthday party and she was super irritable and literally one day could not climb the stairs in our house."
Katherine has juvenile dermatomyositis, a rare childhood autoimmune disease causing the immune system to attack one’s muscles, skin, and other organs.
And causing havoc for Katherine’s family.
If exposed to the sun or ultraviolet rays, her skin flares severely and her muscles become inflamed for days on end.
Katherine also take hydroxychloroquine everyday, an immunosuppressive drug President Donald Trump promoted as a treatment for COVID-19 since March, despite warnings from the U.S. Food and Drug Administration.
Katherine says, "It's been very stressful, because when you're trying to get your medicine and you can't get it...it's hard."
Katherine and her mother say obtaining the drug has become even harder since the COVID-19 pandemic.
And its mention by the president as being a ‘cure’ made them fearful Katherine would no longer have her necessary supply from the pharmacy.
Kristine Alderfer says, “When that started being talked about in the media, we were really nervous about her being able to get her medication.”
Since there hasn’t been a single FDA-approved drug to help with juvenile dermatomyositis, Katherine’s family relies on a pharmaceutical guessing game that costs them hundreds of thousands of dollars a week.
But they’ll continue guessing until an answer for Katherine is found.
Katherine and her family will participate in the Cure JM (juvenile myositis) "Walk Strong Across America" virtual event encouraging particapants to engage in physical activity to support those with the juvenile dermatomyositis and their families.
For more information on the event, click here.