Huntington's Disease

@success101 Yes, there is help. And more is coming on line every day for all autoimmune disease that begin with protein mutations. Pfizer and many other companies are racing to develop more meds. Some have already passed FDA approval. Talk to places like Mayo, Mass General, Stanford, etc.

Hello @success101

Thanks for the encouraging story about your friend. Physical therapy is so helpful for so many things.

Teresa

@hopeful33250 , @dolan, @oldkarl , and others on the Huntingtons and brain disorder group, I live near St. Louis, missouri. Where are you finding good care? What hospital or doctors are you getting care from and in what location? I am reading your post and researching recommended resources. You guys are so helpful to me and to others. I am so thankful to have others tell their experiences that way you don't feel so alone. If i cant reply it is not because you are not being heard. I will be listening!
Becky

Hello @chinasmom

I live in SE Michigan and do not have HD myself, however, I went on the Huntington's Disease Society of America (HDSA) website and they list "Centers of Excellence." I see that there is one in MO, Washington School of Medicine, as well as in Illinois at Northwestern Univ. I don't know how far these are from where you live, however, take a look at the list of Centers. Here is the link, http://hdsa.org/about-hdsa/centers-of-excellence/

As you can, please post and let us know how you are doing.

Teresa

@chinasmom Hi, Becky. You ask about getting good care. I wish I could be more help to you. Actually, I also wish I knew where I cold get good care. I have received the most important care not from the clinics and hospitals, but from the businesses who develop the meds for the stuff I have, places like Pfizer, etc. Another great place is the videos and books done by various outfits such as Mayo, Alnylam, and the foundations for the diseases. Your best bet may be a local doctor who cares enough about you to pick up the phone and dial the bigshot clinics to find out what to do. At this point I am not at all convinced that actually going to the top clinics is worth the time and money except in very specific, selected cases. I spent four months in AZ trying to get a diagnosis, and all I got was my thyroid removed, which just made things a little worse. Well, it did help me spend 4 months with my daughter and granddaughter.

I have a niece who is 37 years old,, we believe she has hunnington . She refuses to get tested, has been referred by family Dr. It has been diagnosed in fathers family..... She alsoo has an 8 yr. old son whose care has fallen on Grand mother. Any suggestions would be helpful

Hi, @concernedaunt23 - welcome to Mayo Clinic Connect, and I apologize for the delay in responding. I've merged your post with this discussion on Huntington's disease so that you could meet other members like @chinasmom @success101 @venki @sisterlove @davidwhitehurstbrown who have talked about this disease. I'm hopeful they may have some insights about your niece you believe have Huntington's and refuses to get tested. @suzie2017 and @hopeful33250 may also have some thoughts.

I thought you may find this Mayo Clinic information on Huntington's disease helpful: https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117.

How is your niece doing now, @concernedaunt23?

Do either one of your neice’s parents have HD? You indicated that it has been diagnosed in the father’s family. Does the father have HD or has he been diagnosed with HD? My understanding is that an individual has to inherit the gene from one of their parents. It is a shame that she won’t be tested? If she does have it, it is possible that her kids could inherit the gene also. It is a terrible debilitating disease. I currently have a sister in law, neice and nephew with the disease. Fortunately, my husband tested negative.