Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience.

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Shannon's Story

I was diagnosed with Parry Romberg's Syndrome at age 29, though it is likely that I had symptoms of the disease long before that. I am writing this story at age 37. I know that PRS affects everyone in different ways, both physically and emotionally. I'd like to share my story in the hopes that it will help others with this disease. I know that other patients' stories greatly helped me as I started my journey with PRS.

My diagnosis came after approximately 4 years of diagnostic tests and multiple doctors and specialists. I did not present with overtly obvious signs of hemifacial atrophy and still do not exhibit this feature to as great of an extent as some others. I do have the "en coup de sabre" indentation on my right forehead and some hemifacial atrophy on my right side - this is what eventually led to my diagnosis. I, instead, appear to have a more neurological presentation of PRS (chronic migraines, chronic optic neuritis which led to optic nerve atrophy in my right eye, and oculomotor problems/diplopia in my right eye). I also have some either related, or overlapping autoimmune-type symptoms including arthritis, hypothyroid, and chronic fatigue syndrome. The sudden onset optic neuritis at age 25 began my journey to a PRS diagnosis (after 4 years of testing for things like Multiple Sclerosis, Lupus, and others). In looking at old pictures, I can see the "en coup de sabre" indentation since at least age 17 -though it had been milder in the past. I am not sure, then, when my PRS exactly started, nor am I sure if it is still active. The facial atrophy does not appear to have progressed; however, the chronic migraines and other disease activity remain. I take a daily anti-convulsant to help with the migraines, and I have recently found that a healthier diet seems to help some with the chronic fatigue. I will never get my vision back in my right eye, but I have learned to work with that!

I wanted to share my story because, throughout this journey, I found that it was sometimes difficult to locate information on the "other" symptoms of PRS besides, or in addition to, the facial atrophy. I do not think that my facial atrophy will ever rise to the level of needing surgery and I can't imagine how difficult that must be for some who struggle with this disease. The burden of the "other" symptoms can, however, also be difficult to deal with on a daily basis, and I hope that we will soon have more research and information on symptoms like migraines, seizures, eye disorders, and overlapping syndromes to paint a complete picture of how PRS affects different individuals.

I do think that having this disease has made me a more compassionate person, and I appreciate many more things in life that I perhaps would have taken for granted before. I have an amazing husband, for example; and despite dealing with the symptoms of PRS, I completed a PhD program at one of the top graduate programs for my field, went on to complete a competitive postdoctoral fellowship at a school of medicine at a major research university, and have recently accepted a faculty position in my field at an amazing liberal arts school.

I suppose my take home message is this: be your own best advocate. Having to move 3 states from when I was diagnosed with PRS to when I obtained my faculty position meant having to start over with doctors and specialists 3 times! I learned that we often know more about our disease than some of the doctors - it is just such a rare disease, and sometimes you have to "shop around" to find the right physician, and be proactive when you do! I also learned some great lessons about taking care of my health, and the importance of social support - surround yourself with supportive people and resources!


All photos and text are the property of the families represented, and may not be used without their consent.

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