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Dealing with Someone with Hunington`s Disease



I am taking my son to Cleveland Clinc on Nov.3. If he is diagnosed with this hunington`s disease. What do I do next,or where do I go next? I am terrified this is what`s wrong with him. My son is 15 now and has been to so many hospitals and specialist. He was born with Tettralogy Fallot,then Perricardiun,and then he suffered from a stroke and seizures. All of that before age three!! That was all very scary,but I`m more scared now than ever of this huntington`s disease. My son is not doing well at all I don`t know what to do for him????


We would like to take the time to apologize for the delay in responding to you question.  We had not forgotten about you!  There have been technical difficulties with the system which are now corrected.  Your son had his blood drawn yesterday and your anxiety level must be rather high.  Until you know what the results are, try not to do too much reading about Huntington's and keep focused on the day's activities.  Afterall, there is that possibility that it may not be Huntington's.  If in fact the test does come back positive, there is a wonderful website at www.HDLighthouse.org.  Also, if he is followed at the Cleveland Clinic, the staff there will be more than happy to help you and your familiy. 


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Response by:

Susan Thompson, MSN, CPNP
Research Nurse Practitioner
OSU Nisonger Center
The Ohio State University