When I got my diagnosis, at first, I was relieved. I had been working really hard to figure out what was wrong with me. But then I realized that I was in a very serious situation. I had this rare disease, there was no cure, and I was going to have to face this for the rest of my life.
Disclosure: I received a small sum from GSK for shooting this video, which I donated to charity. For more details and a full list of disclosures, please see the Disclaimer page.
This 2 min video was recorded at GSK’s offices at the Navy Yard in Philadelphia last month as part of their educational efforts about EGPA/Churg-Strauss vasculitis. It was filmed for a social media campaign to raise awareness about living with rare diseases like EGPA.
Thanks to GSK for their outreach and educational programs on EGPA and other rare diseases, and many many thanks for their work and dedication in developing new treatments for eosinophilic disorders, including EGPA.
From GSK’s website:
Meet Jennifer: A science researcher whose quest became her own health
As a biomedical researcher at a major medical institution, Jennifer’s happiest days are spent reading, learning, and working on discovering something that will help improve people’s health. While her research includes rare diseases, she never imagined that she’d one day put her skills to use on herself, to unlock the strange mystery going on inside her body.
Aside from having allergies, Jennifer had a healthy childhood. As her allergies became progressively worse in her 30s and 40s, she also developed asthma. Then things started to get strange. She developed a host of respiratory symptoms, skin rashes, headaches and something called eosinophilia, which is a type of white blood cell in allergy and asthma, the levels of which were unusually high in Jennifer. It had taken Jennifer six months of testing, visiting multiple specialists including Respiratory and Immunology specialists when a Rheumatologist finally diagnosed her with a rare disease, Eosinophilic Granulomatosis with Polyangiitis (EGPA), formerly known as Churg-Strauss syndrome.
EGPA affects about 5,000 Americans. It is characterized by asthma, an increase in eosinophils, and inflammation of blood vessels (vasculitis).
“When I was diagnosed, I felt very relieved, but then quickly realized I was in this very serious situation. I had this rare disease, there was no cure, and I was going to have to face this for the rest of my life.” -Jennifer
Today, Jennifer plays a proactive role in managing her disease with her healthcare team.
“My role in the team is that I am the quarterback,” said Jennifer. “My Rheumatologist is the coach and the other specialists are special teams. I am the one that has to get in there and make the plays, take the hits, and I have to get back up and get back in for the next play.”
To help her prepare, Jennifer makes clear notes of what’s going on in her life from what’s working well to what’s not and she brings a summary to her doctor’s appointments. She makes sure that if she feels there’s something wrong, she raises the issue so that it can be addressed.
Having a support system around her also helps her stay healthy. If Jennifer could offer advice to other patients, it’s the following:
“I think it is really important to take the time to reach out to the people who are supporting you,” said Jennifer. “We know when we’re not feeling well, we know when we suspect a flare, and we know when a doctor is listening to us. Build the people and team around you that will help you to move forward, because you can get there. Pay attention to your gut and if you are not feeling well, keep pursuing the answers.”
You can view the post and video on GSK’s website at the following link:
—