The team finds a diagnosis for LaKeitha, searches for answers for Kelly and checks in with Monique and Torri’s mysterious swelling disease
The September 26, 2019 episode of Chasing the Cure was all about how there’s true strength in numbers — and not letting illness isolate you from living a full life. Let’s have a look at this week’s cases and how the Chasing the Cure team is working to unravel yet another set of medical mysteries.
Case file: LaKeitha
This 42-year-old mother of four from Marshall, TX, knows a thing or two about numbers. LaKeitha’s lived with a mysterious condition on the left side of her body for 40 years.
Her relatives recall that LaKeitha’s unexplained dark spots and wart-like growths began appearing when she was about two years old. Since then, LaKeitha’s seen at least 20 medical specialists and not one has given her a definitive diagnosis. Growing up, other kids thought she was contagious and stayed away. Now, as an educational professional working on her teaching certification, her youngest students are disturbed by the growths on her hands. What she wears and where she goes is often dictated by how she feels about her highly visible condition.
More than anything, LaKeitha wants to be able to wear her wedding ring on the proper finger — something that the growths on her left hand currently make impossible.
The Chasing the Cure team ordered a full dermatology workup on LaKeitha. They also expressed interest in a potential genetic disorder as the root cause of her ailments, noting that it’s extremely rare for a condition to only affect one side of the body.
Thanks to the Chasing the Cure team, LaKeitha underwent two dermatological biopsies with a dermatologist near her home. The results were sent to Dr. Wendy Roberts, a dermatological pathologist for further evaluation. Dr. Roberts was able to give LaKeitha some incredible news: her condition isn’t an autoimmune disorder or progressive.
Dr. Roberts diagnosed LaKeitha with linear epidermal nevus. This condition is a rare genetic disorder that causes growths and discolorations along what are called “the lines of Blaschko, which are normally invisible on skin, are thought to follow the paths along which cells migrate as the skin develops before birth.”
Now, LaKeitha’s on a path to receive more genetic testing and begin a course of treatment with oral retinoids. After 40 years, LaKeitha has an answer. Here’s to her next 40 years wearing her wedding ring on her left hand.
Case status: diagnosis received, treatment in progress
Lakeitha's Story was First Featured on Episode 8 of Chasing the Cure
Case update: Monique and Torri
Back in Episode 2, sisters Monique and Torri finally received a diagnosis for the mysterious swelling condition that had consumed their lives: hereditary angioedema. And thanks to Chasing the Cure, they gained an unexpected new contact in their lives – a neighbor who lives with the exact same condition. In fact, Monique and Rhett both have children who go to the same school.
Now, Monique, Torrie and Rhett have each other for support. They’ve even shared tips for the life-saving medication that can be used when the swelling threatens to close their throats. These three women can travel together through life as one another’s allies and support systems, proving that there is, indeed, strength in numbers.
Case file: Kelly
Twenty-five years ago, Kelly lived a pretty carefree life in San Diego, CA. That all changed when she ended up in the emergency room one day with excruciating, inexplicable pain that began in her chest and radiated outward and upward, even into the depths of her ears. She thought she was having a heart attack.
To this day, she still hasn’t received a diagnosis. It’s been 25 years since that day in the ER and Kelly’s cautious about where she goes and what she does because she never knows when an episode is going to hit. Nitroglycerine seems to be the only thing that helps control the pain but it also leaves her with persistent headaches.
The Chasing the Cure physician team jumped into action, seeing the need for Kelly to have a full cardiovascular workup performed (which had, oddly, never been done). They were also concerned about her persistent use of nitroglycerine, realizing Kelly’s need to come off that medication.
Kelly was sent to Dr. Americo Simonini for a cardiovascular evaluation. Here, she received the good news that she had no apparent vascular blockages. From Dr. Simonini’s visit, Kelly was back in the Chasing the Cure studios to meet with Dr. Rochelle Wolensky, an infectious diseases expert. The next course of action is a revision to Kelly’s medications to get her away from the nitroglycerine use, an esophageal workup to rule out esophageal spasms and cardiovascular risk assessment to further diagnose her chest pain.
After 25 years of pain, Kelly now has a team of experts on her side. With any hope, the future will bring her answers, hope and a trusted team of experts on whom she can rely to help her manage her condition once she receives a diagnosis.
Case status: in progress – stay tuned for updates
Kelly's Story was First Featured on Episode 8 of Chasing the Cure
Strange Affliction: Carli
In this week’s “Strange Affliction” segment, we met Carli. She’s a 23-year-old from St. Louis, MO. At age five, Carli jumped off a barstool and hit her back, resulting in incredible swelling. The next day, she visited the doctor – a trip that would change Carli’s life.
Carli lives with fibrodysplasia ossificans progressiva (FOP), also known as “Stone Man Disease,” a rare disease that occurs in only one out of two million people. It causes the body to form a second skeleton, transforming the body’s soft tissue into bone over time. At present, Carli’s back is now frozen into one solid position and there is no cure. Instead, Carli’s making the most of her life and hoping that information researchers gather from her case will help kids in years to come.
Carli recently moved in with her boyfriend, taking advantage of the time she has to live a life filled with love. Carli doesn’t know what kind of time she has left, but she’s measuring her days in the contributions her case can share with future kids who might be born with this rare disease and the laughs she can have so long as her body allows.
In preparation for the next episode, Chasing the Cure needs your help. Jennifer, a 30-year-old from Tracy, CA, received a tattoo when she was 16. Soon after, she developed painful skin lesions all over her body called dermafibromas. Have a look at her case:
Jennifer's Story will be Featured on the Next Episode of Chasing the Cure
If you have ideas about what could be causing Jennifer’s condition, share your thoughts with us on the Chasing The Cure or on . You can also visit the Chasing The Cure and comment on Jennifer’s case directly.
Want to watch this week’s episode online? Tune in here.
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.