Thank you for joining us tonight.
The drug hydroxycloroquine has become popular lately.
President donald trump has been promoting the drug as a treatment for covid-19 and recently announced he's taking it as a preventative measure despite f-d-a warnings.
Tonight fox 55's mallory beard spoke to a local teenager who depends on the drug for a rare disease.
She explains how quarantine ... and increased demand for the drug ..
Has impacted her life.
Katherine alderfer celebrated her 14th birthday in quarantine with her twin sister just four days ago.
But because of her autoimmune disease, katherine has known quarantine for most of her life.
Kristine alderfer//katherine's mom :11-:22 "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 dermato myositis.
A rare childhood autoimmune disease causing the immune system to attack one's muscles, skin other organs.
And causing havoc for katherine's family.
Kristine alderfer//katherine's mom "when we got the phone call from the doctor at riley, they said you need to pack your bags an you need to come to the emergency room and we had googled the name of the disease because we didn't even know how to say 'juvenile dermato myositis."
Mallory beard//[email protected] :47-1:02 stand up: when guests come over to the alderfer house, they might wonder why there are so many umbrellas.
But 14-year old katherine alderfer basically needs them to survive.
If exposed to the sun or uv rays, her skin flares up severely and her muscles become inflamed for days on end.
Katherine takes hydroxychloriquine every day.
If that name sounds familiar it's because president trump has been promoting it as a treatment for covid-19 for months despite warnings from the fda.
Katherine alderfer//living with juvenile dermato myositis 1:18-1:23 "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 its become even harder now to find the drug.
Kristine alderfer//katherine's mom "quite honestly, the medication that has been touted in the media as being a 'cure' or 'preventative medication' for covid is the hydroxychorloquine which is something that katherine takes everyday.
So when that started being talked about in the media...we really were nervous about...'is she gonna be able to get her medication?"
Since there hasn't been a single fda-approved drug to help with the disease, the 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 alderfer//living with juvenile dermato myositis "well they've always been there by my side.
Well since i was diagnosed when i was four...it's been ten years.
So the whole entire ten years, they've always been there."
And they'll continue guessing until an answer for katherine is found.
Alan alderfer//katherine's father 2:08-2:28 "katherine is one of the toughest children i've ever met in my life.
She has dealt with pain for ten straight years and she has never complained once.
She doesn't complain about her legs hurting or not being able to walk up the stairs, she just does it.
She's an amazing little kid that really just wants to be normal."
In warsaw, i'm mallory beard fox 55 news.
Katherine is taking part in the walk strong across america event.it's a virtual walk on the fourth of july supporting kids with her disease.
If you'd like more information, head on over to our website wfft