Baylor College of Medicine offers help unraveling rare diseases, strange symptoms

HOUSTON - Rare diseases often cause unexplainable medical symptoms that can be exhausting and infuriating, debilitating and even deadly.

"The symptoms can vary tremendously, from neurological problems to diseases of the nervous system, of the kidneys, the lungs, every organ really, and very often in a combination," explains Dr. Hugo Bellen with Baylor College of Medicine. While these conditions are rare and not many people suffer from them, rare diseases themselves are far from rare, with 1 in 10 people diagnosed with one.

Baylor College of Medicine (BCM) is teaming up with the Undiagnosed Diseases Network Foundation, inviting anyone suffering mysterious symptoms to join them this weekend to try to find answers.

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Michele Herndon was a pediatric nurse for almost two decades. Now, she's a mom on a mission after losing her beloved son, Mitchell, to a rare disease five years ago. Researchers in Houston were able to figure out what was plaguing her boy. "My oldest son, around the age of 12, started having unusual symptoms that even the best doctors around the United States couldn't figure out, and so ultimately, we were referred to the Undiagnose­d Diseases Network when he was 17, and we traveled to Houston," explains Michele. "We got to see a lot of doctors at Baylor. They did our genetic testing, and found this very unique genetic change, put it in fruit flies, and ultimately were able to solve the case. Then, my son became the first person with this new disease that's now named after him."

It's called Mitchell's Syndrome and yes, fruit flies at Baylor College of Medicine often help researchers figure out what is going on in humans!

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Dr. Bellen is a world-renowned medical researcher at BCM who helped discover Mitchell's Syndrome and says researchers often unravel the mysteries by looking at the DNA of children and their parents. "By sequencing their genomes, we can hone-in on a specific gene or on a set of specific genes. What we then do is to model these mutations in fruit flies," explains Dr. Bellen. "By doing so, we have been able to diagnose more than 50 new human diseases in the last few years, in collaboration with the physicians. Physicians diagnose, but they can't find the real cause and by working with them, we help them define what is happening in the kid."

Rare diseases often go undiagnosed between a few years and up to 15 years! Michele meets-up with other families who have children diagnosed with Mitchell's Syndrome. She doesn't want anyone else to suffer without answers, so she invites everyone concerned about a rare disease to join them at the Health Museum in Houston on Saturday. "That's what we want to provide, is a community and a space where people feel like they belong and they're understood," states Michele.

Even if you can't attend the community event, your family can get help. You're first urged to find a geneticist to collect and study DNA, then if you don't get answers from that, the Undiagnosed Diseases Network provides free evaluations. "They can apply to the UDN, the Undiagnosed Diseases Network, which is supported by the National Institute of Health, and by doing so, they will be assigned a clinic in the United States. There's now 19 sites throughout the United States where they'll be assigned a clinic and so that's been a quite successful approach," Dr. Bellen says.

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"Our purpose is to start to build a community of undiagnosed patients and ultra-rare patients. Having had a son who was undiagnosed for many years, myself, I just really felt alone, even though I had a lot of friends, a lot of family, a lot of amazing doctors, and just really never felt like people truly understood what we were going through," explains Michele. "And so that's what we want to provide, is a community and a space where people feel like they belong and they're understood."

The event is from 10 a.m. to 2 p.m. Saturday, Oct. 26 at the Health Museum in Houston. It helps to register in advance, but you don't have to. Register for the UDNF Community Event at Baylor College of Medicine.

For more information on the Baylor College of Medicine Undiagnosed Diseases Center, click here.