Patient Stories

New Mom Develops Guillan-Barre Syndrome After Difficult Labor

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When Heather Hodsdon walked into Belmont Wheelworks in April 2010 to get her bicycle fixed, manager Gary Wood couldn’t help but laugh. Hodsdon was planning to do the Hyannis Port Challenge for Best Buddies, a 100-mile ride from Boston to Cape Cod. “She bought it […]

A Family Diagnosis of Adult Polyglucosan Body Disease (APBD)


I was in my early 50′s when I started experiencing leg cramps, stiffness and heaviness in my legs, muscle twitching and soreness, foot dragging, and stumbling. In addition, I had numbness in my hands. Over the years, the symptoms slowly progressed: the numbness moved up […]

Multifocal Motor Neuropathy: Where Were the Resources?


The best way to explain the onset of Multifocal Motor Neuropathy is like someone had flipped a switch and all the electricity containing those very important messages flowing from my brain to the muscles in my arms and legs stopped; the lights were dimming; the […]

Lisa with Adrenal Cortex Carcinoma, “I Had to Fight for My Treatment Plan.”


I was 35 years old when I was diagnosed with Adrenal Cortex Carcinoma–stage IV, metastasized to the lungs. I was recently divorced, a single mom with a five and seven-year-old That’s the scary part about ACC: don’t have symptoms until it’s too late. The only […]

Kickin’ Fightin’ and Strong: Klippel-Feil Syndrome and Me


I was diagnosed with Klippel-Feil Syndrome (KFS) shortly before my first birthday. At birth I had the ‘classic’ triad of symptoms: short neck, low hairline and limited movement of the neck. I also had various other anomalies associated with KFS, including a missing right thumb […]

Kallmann Syndrome Causes Absent Puberty


Kallmann syndrome is a rare genetic hormonal condition. Its primary symptom is a failure to start or fully complete puberty, it is also connected with a lack of sense of smell. Some patients will go through a partial puberty but most will have little or […]

Clippers Deliver a Dream for Kid Guest Announcer with Batten’s Disease


Friday, July 25, 2014 was a memorable day for the Dahl family of Chatham, Illinois. Parents David and Corrina, and their sons Clifford, 17, and Isaac, 12, set out not just to attend a minor league baseball game at the Huntington Park in Columbus. Their […]