It’s rare disease day and with so many amazing stories of raw strength and courage, we at Patient Services Inc., are incredibly grateful to play a part within this special community. For every call, email, or even online submission for assistance from someone within the rare disease community, we give thanks to be able to do what we do each and every day.
Most often, when the phone does ring, the voice on the other end is one who has been courageously fighting their battle, seemingly all alone. With the cost of treatment, for many, the choices patients face are one’s that no one should ever have to face alone, nor ever have to make. But in all of this, if there is one thing we have learned, it’s that beyond every storm cloud, blue sky awaits. And it is here, where hope lies in wait.
What Is Rare Disease Day?
According to rarediseaseday.org
, “Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.”
Why Is Rare Disease Day Important?
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
“It’s a choice between do I get my medications and pay my insurance or do I feed my family. And, that’s something that is invaluable that PSI provides. I shouldn’t have to make that choice. Nobody should have to make that choice.”
Diagnosed at 33 with HAE, Amee had been misdiagnosed numerous of times. The journey to diagnosis is without words. Nearly dying 6 times, now since being on therapy, Amee has not experienced any of those episodes.
“Hope is out there for those of us who have chronic illnesses whether its HAE or anything else, there is hope out there because there are associations like PSI. “
“It was challenging. I stressed out about it. There were times when I felt like, “Why bother?” There was one time when I said, “Fabry is gonna win. You know, there’s no hope here. I had a lot of symptoms as a young child and as a teenager, but the symptoms always got misdiagnosed with something else. The symptoms seemed to get full-blown once I reached my forties. I went out one day, actually went to go wash clothes at a laundromat and I was standing up at the washer and my legs just gave out on me. And, I kept struggling to get up and I kept falling back down.” Lisa tells us from a rooftop in DC where she, and other rare disease patients gathered for an Evening of Hope.
When Lisa was diagnosed, she was having a home built in Pennsylvania. If only she had known, things would be different.
“I got diagnosed during the time I was having a home built in Pennsylvania, had I known before I started building, I definitely would have chose a different state, because I moved to a state where nobody knows about Fabry’s Disease. So, I have to travel out of state, just to see doctors. It’s hard to get up and go out of state to see a doctor if you are in a lot of pain.” Lisa continued.
What do you do when no one knows anything about your diagnosis? For Lisa, she did what so many others have done, she went to work and got to know everything she could about Fabry’s disease. Lisa shared with us about what that process was like, “I started educating myself on this disease because the doctors didn’t know how to help me. They didn’t know much about the disease. So, I had to teach myself so I know how to cope with the disease so that I am able to tell the doctors. I’m unable to work. I’m unable to do the things I use to be able to do. Even the things you take for granted like climbing the steps.”
With a better understanding about what Lisa was facing, there was something even far greater that lurked just beyond diagnosis that would seek to stand in her way, and do everything in its power to keep hope from shining through. And that was the cost of treatment.
But hope always will find a way. At PSI, if we can be that ray of light, all we can do in response, is to give thanks. Lisa reflected upon the time our paths crossed, “When I met PSI, I expressed my concern about being in a new home and whether I was going to pay my treatments or pay my mortgage. I went from a working income to disability, which is not even close to what you’re making. With PSI, I have a reason to fight because I don’t feel alone. Having a rare disease makes you feel very isolated. You feel different from everybody else. Especially when you are in a situation that’s affecting you financially, not just physically. PSI is hope.”
Meet Patient Services Inc.
The founder of PSI shaped the very first non-profit patient assistance model in 1989 and knows the pain firsthand of watching a loved one fight-and-lose their battle against chronic illness; he knows, too, the crippling financial burden often carried by those left behind. Since our inception in 1989, Patient Services has been a pioneer leading the charge to find solutions to the challenges that face the chronically ill in the United States.
We provide financial support and guidance for qualified patients with specific, rare chronic diseases. Through PSI assistance programs, patients and their families rediscover hope and health.
To learn more about PSI and our supported illnesses, click here