Deborah Deffenbaugh's Page

Hi Deborah! Yes we are practically neighbors. Yes I can help a little with Guillan Barre and HUS. Guillan Barre and HUS have the H factor deficiency as its common denominator. It took me years to finally get an answer on this but I persisted as I felt there was a connection between my disease and my daughter's. Mostly she and I presented the same in our respective diseases. We both did not have classic symptoms and it took us a long time to get to where others got quickly. Also I do know that there is a form of Guillan Barre that is a chronic condition. Could your husband possibly have this form instead of what the doctors say? I'd say that about ten years after I had Guillan Barre, my father had worked with a man and he was diagnosed with the chronic type of Guillan Barre. It is a very slow debillitating disease and eventually it does take everything. However I hadn't heard of anyone else with it. Guillan Barre and atypical HUS are both quite rare. When I had it there was no treatment rendered at all. You were simply monitored and if you were going into respiratory failure, your body would be assisted and hopefully you'd regain your function. At the time I had it too I was one of the youngest cases. To this day, no one knows why or how I got it. I did not have a flu, cold or mono which are supposed to be ways to get it. The only way it was confirmed was through a spinal tap. Also I had the subdeural hematoma at age three months and there was no known cause for that either. My husband, oldest daughter, Jessica and myself though are all Factor H deficient. The most interesting pare to my story and Jessica's is that only she and I had Factor H diseases. I don't know what the connection to the hematoma is but I do feel it's part of the entire puzzle. I do wish I could tell you more on either front but I think in the forty years since I've had Guillan Barre, there's been little progress at explaining it. There has been some progress at treatment but I don't believe we know too much more as to its cause than we
do HUS. I always feel like I swim in questions and they constantly float about cause they are left unanswered. But I hope this helps a little. At least I do know what Guillan Barre is. How is your husband coping? What kinds of physical issues is he dealing with? How are you coping with both your busband's and your daughter's diseases? If I can help in anything else, give me a jingle. In the meantime, keep hope and God's graces close to you.