Doctors don’t always know best.
That’s something every parent whose child has a rare, chronic illness understands.
These parents featured on Rare Connect finally got a diagnosis of Muckle-Wells Syndrome (MWS) for their 5 year-old son.
Of course, it only took four and a half years from when he first starting showing symptoms…and after waiting one and a half years to see a genetic specialist.
But finally having a diagnosis seems to put the old saying, “Good things come to those who wait” into fresh perspective. A diagnosis meant a treatment, and treatment meant their son wasn’t as sick.
All good news, right?
Wrong.
Treatment for rare autoimmune diseases can be crazy expensive.
Consider the medication their son takes. While it’s been helping his symptoms, it also comes with the itty bitty price tag of $110,000 a year.
The kicker? They have two insurance providers and neither one will cover it. What’s the point in paying high premiums if insurances won’t cover the actual medications you need?
As they wait to hear about possible government funding, people in the community recommended other ways for decreasing the cost of medications.
Many pharma companies, especially those who have drugs that treat rare diseases, offer financial assistance programs. Other drugs used to treat MWS may cost less, so it’s important to look into all treatment options.
Because unfortunately, the work of a parent is never done. And when your child has a chronic illness, you’ll never want to stop fighting.
So reach out and connect.
You never know who will have the answer your family is looking for.
