A path forward for 5 patients with rare, hard-to-solve medical cases
On August 29, 2019’s Chasing the Cure episode, the world met four new cases and received updates on two others in progress. Let's dive into the episode and explore the medical mysteries that these patients need to be unraveled. If you want a refresher on last week's show, check out last week’s Episode 3 recap here.
Mallory’s a 35-year-old single mother in Michigan who’s hoping for an explanation why her life changed on a dime seven years ago. When she was eight months pregnant, she became ill and left her active lifestyle behind. She suffers from skin lesions that are spreading all over her body — inside and out, excruciating joint pain and debilitating headaches.
She describes herself as a “professional patient,” because she’s been hospitalized over 50 times since 2011. Mallory doesn’t recognize what her illness has made her become when she looks in the mirror and just wants a diagnosis that can explain her illness. She dreams of a more active life with her eight-year-old son.
The Chasing the Cure physician team went quickly to work on her case. They've ordered what's called a pathergy test to understand better how her skin develops lesions. They also noticed she's on a wide variety of medications and want to take steps to get her medicines under control.
While Mallory had received a previous diagnosis of Behçet’s Disease, a rare disease that causes inflammation in the blood vessels throughout the body, she hasn't been responding to the medications typically used to treat the condition. The Chasing the Cure team called in Dr. Michelle Henry, a dermatologist, to help further diagnose Mallory’s illness.
Next steps for Mallory are a trip to New York to work with Dr. Henry's team to explore her skin lesions, alternate diagnoses and a possible deep skin biopsy to see if she genuinely had a vascular-related disease. We'll be following Mallory's case throughout the season.
Case Status: In Progress – stay tuned for updates
Mallory's story was first featured on episode four of Chasing the Cure
In Episode 2, viewers met the mother-daughter duo of Debra and Delaney, both of whom had a shared lifetime of symptoms including gradually going blind.
Thanks to the Chasing the Cure team, Debra and Delaney were referred from complete genome sequencing with a San Diego-based lab named Illumina. They’ve discovered that Debra and Delaney have made medical history – they are patients five and six to be diagnosed with one of the rarest diseases in the world: Warburg-Cinotti Syndrome.
Debra and Delaney have been looking for answers for over 12 years, and now, they're moving forward knowing they're not the only ones with their unique set of challenges. Delaney is also a candidate for an artificial cornea transplant and could have her eyesight restored. We'll be following their case as it develops.
Case Status: Diagnosis Made – stay tuned for updates
debra and delaney's story was first featured on episode two of Chasing the Cure
Dejanique’s only 22 years old, but she’s had challenges far beyond her years. She lives with Type 1 diabetes (the type that kids are born with) and was living a life with her blood sugar 100 percent under control. In 2014, she had her appendix removed. And this is where her real troubles began.
Soon after surgery for her appendix, Dejanique started to vomit uncontrollably. It turned out that she suffered from gastroparesis. This is a challenge common to those with Type 1 diabetes and prevents the stomach from emptying completely after eating.
Dejanique’s blood sugar spiraled out of control. The excessive vomiting caused her top row of teeth to rot. She even had to drop out of high school because she was too sick to continue with her studies. She wants to reclaim her health and find out what it's like to be a teenager in control of her body.
The Chasing the Cure physician team honed in on her Type 1 diabetes, estimating that it could be the culprit in her ongoing health problems. They engaged the help of Dr. Eiriny Eskander, an endocrinologist and diabetes specialist, to help with Dejanique’s case.
Dr. Eskander wanted to get a better understanding of Dejanique’s blood sugar levels throughout the day, so she placed on her a continuous glucose monitor that measures her blood sugar in real-time 24/7. The monitor will help Dejanique know if she needs extra insulin and hopefully get her glucose levels back to healthy levels.
The next steps? Her team will keep monitoring her blood glucose with the new monitor. She’s also scheduled for a dermatology exam to assess the rash on her abdomen.
Case Status: In Progress – stay tuned for updates
dejanique's story was first featured on episode four of Chasing the Cure
Jo’s life before her illness was filled with the wonder of the outdoors. This 48-year-old schoolteacher from Rochester, New York ran 20 miles a week and traveled through life with her equally-active wife by her side until a single flight changed her life.
Mid-flight, Jo experienced excruciating, stabbing pain. She was hospitalized for pancreatitis and within days, her gallbladder was removed. She and her wife then noticed a white ring had formed around the irises of her eyes. She lives daily with incredible swelling, and when her flare-ups start, all she wants to do is curl up and stay in one place because her pain is nothing short of torturous. She has no sensation in her legs from the knees down, and hair no longer grows on her legs. She's lost sensation in her feet as well, making it difficult to walk.
Jo’s looking for answers that will help her return to a more active life — one that doesn’t leave her with a feeling that she has boiling water running beneath her skin.
The Chasing the Cure team was concerned that Jo's complications were a result of previous gastric bypass surgery. She's been diagnosed as copper-deficient, a common side effect in gastric bypass patients. They're also curious whether Jo's symptoms are indicators of a rare autoimmune disorder called Sjogren’s Syndrome, which causes the body to attack itself accidentally.
Jo's received an ophthalmic evaluation to rule out some possible diagnoses, which brought her a great deal of relief. Now, Jo's continuing to undergo evaluation by a neurologist for her skin sensitivity, and we'll keep following her case as medical experts unravel her mystery bit by bit.
Case Status: In Progress – tune in for updates
jo's story was first featured on episode four of Chasing the Cure
As the show closed, audiences met Jo, a 51-year-old woman in Arkansas. About 15 years ago, she got what she thought was a spider bite on a Friday. By Saturday, the wound had doubled in size, and her skin around the wound began disintegrating. She was told she was likely bitten by a brown recluse.
Anything she does to treat the wound makes the wound worse. Her body is attacking itself and the wound leaves her in constant, 24/7 pain.
Sharon's story was first featured on episode four of Chasing the Cure
Next week, the Chasing the Cure team will dive into Sharon’s case to help her find a cure. If you have ideas that could help Sharon, be sure to weigh in on social media via Facebook or Twitter. You can also visit the Chasing the Cure forum where you can review case files and share your thoughts on where medical experts might look to bring relief to any of the cases featured on the show.
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.
Case Files Related To This Article
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I want my life back! Help me figure out what turned me from active runner, teacher and social butterfly to a life of pain and debilitation.
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Five years of extreme chest pain,back pain and,abdominal pain with severe vomiting for periods of time. Occurred after an appendectom
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Life altering, painfully debilitating, unsightly, and uncontrollable symptoms causing over 50 hospitalizations since 2011.Desperate for help
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Connective tissue disease, blindness, JRA, chronic neuropathy, Marfan’s, birth defects, Dupuytren's, subluxing joints, chronic infections