The team checks in with Sean and Lauren, and introduces a new medical mystery related to debilitating pain
On the September 12, 2019 episode of Chasing the Cure, we met one new case and received a long-awaited update on another. We also have a new case the show will be exploring in-depth next week that needs your help.
Let’s dive in and have a look at the people who are relying on the show’s medical experts and Crowd Care community for answers to their pressing medical issues.
Case file: Lauren
At the end of last week's episode, we briefly introduced you to Lauren. This 30-year-old woman from Rockford, IL, has lived with debilitating and painful swelling in one of her ankles for two years. There are days she can barely walk from the bedroom to the bathroom. She's seen close to 20 specialists, and no one's had any answers for her.
She's also been on prednisone, a steroid, for 18 months. While the steroids are the only treatment that has helped her swelling, they've caused her to gain 50 pounds. They’ve also brought on steroid-induced diabetes, adding yet another health challenge to Lauren’s plate.
Lauren just wants answers – a diagnosis – so she can start treatment and get back to the life where she was the life of the party. The Chasing the Cure physician team leaped into action. Their biggest concern for Lauren was the possibility of lymphedema, a condition that pushes fluid into the body's tissues. They were also concerned that she could have a vascular disease that was affecting blood flow into her ankle. They referred her to a vascular surgeon and a radiologist for immediate assessment.
Thankfully, advanced testing helped Lauren rule out lymphedema. Her lymphatic system was functioning as usual. However, the testing did discover indicators that Lauren could be suffering from polyarteritis nodosa (PAN). This condition causes inflammation in the body’s blood vessels.
The Chasing the Cure physician team was able to deliver a preliminary diagnosis to Lauren. She is suffering from a rare form of PAN known as cutaneous PAN, which limits the inflammation to the skin. Lauren’s next stop is to meet with a pecialist who’s an expert in subcutaneous PAN. Doctors are also exploring how they can bring Lauren safely off the steroids she’s on, and replace them with different medications to help control her swelling.
Case status: Diagnosed, further evaluation commencing – stay tuned for updates
Lauren's Story was first featured on episode six of Chasing the Cure
Case file: Sean
We met Sean back in episode three. He's the single father of two from Leeds, Alabama who's been losing weight nonstop with no explanation. When we last checked in, Sean was at the Mayo Clinic in Jacksonville, Florida, undergoing a series of tests to help rule out a wide variety of potential medical disorders. The best news for Sean is that specialists have rules about both blood and bone cancers. They've also examined his gastrointestinal tract and it looks healthy.
Sean’s frustrated, though. He was hoping for more definitive answers following weeks of testing so he could be on his way towards a cure by now. The one diagnosis that Sean has received, however, is one for arthritis in his hips and shoulders.
The Chasing the Cure physician team was ready to take the next step and has arranged a referral to an endocrinologist in Sean's home state of Alabama. Sean will be on his way to the University of Alabama at Birmingham to see Dr. Herb Chen for a full endocrinology workup. He'll also be undergoing a 48-hour stool study to detect any malabsorption issues since his body doesn't seem to want to absorb calories at a healthy rate. In addition, Sean will undergo genome sequencing to identify any potential genetic reasons for his symptoms.
As a note, Sean’s been very active in the show’s Crowd Care platform. He’s received over 700 calls, comment, and texts from people wanting to help him find a cure. The show also helped Sean reconnect with a sister he hasn’t seen in 20 years. And while he might not have an official diagnosis yet, he has a rekindled family relationship to help him stand strong until he finds answers.
Case status: in progress – stay tuned for updates
SEAN'S CASE WAS FIRST FEATURED ON EPISODE THREE OF CHASING THE CURE
And for next week, the Chasing the Cure team needs your help with Alex’s case.
Alex's Case Will Be Featured on Episode Seven of Chasing the Cure
Alex is a 20-year-old man from West Hempstead, New York who's been suffering from debilitating pain since his sophomore year in high school. He was sitting on the couch, watching TV when he was 16, and terrible joint pain just overtook his body.
Now, Alex has had to drop out of college because the pain is so bad. He has days where he can’t get out of bed. He’s to the point where he feels like if he doesn’t get answers soon, he never will.
If you have ideas for what could be causing Alex’s pain, share your thoughts with us on the Chasing The Cure Facebook page or on Twitter. You can also visit the Chasing The Cure online community and comment on Alex’s case file directly.
E. Napoletano is an award-winning journalist and the recipient of the 2019 Illinois Women’s Press Association first-place prize for her feature on the traumatic effects of family separation policies at the border.