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September 29, 2005
Dr. Martha Nance Chat
The Washington Post has posted a fascinating transcript of an online chat with Dr. Martha Nance, a Minneapolis Huntington's Disease researcher. You can read the whole chat here.
A sampling from the chat:
On "Hot Flashes": Many people with HD seem to be metabolically "overactive", so that they are hot when other people are cool or comfortable....On Juvenile HD research: You are correct that the main focus of clinical research in HD is on the adults who make up about 90% of affected individuals. However, one could argue that the mouse models of HD used in laboratories are actually models of juvenile HD, as the HD gene mutations put into their cells more closely resemble those of children with HD than adults...
On what vitamins to take: Regarding vitamins, none have any proven effects, but the things people talk about include Vitamin E (with the recent report suggesting that doses >400IU/day can be harmful), multivitamins, which would cover any nutritional deficiencies, perhaps the B-vitamins, which are important for the brain, fish oil or omega-fatty acids--in standard doses, and Coenzyme Q10. There is a lot of research interest in CoQ10, although again no proof that it slows the course of the disease, and the doses that are being considered for research trials are very high--over 1,000mg/day. The decision about how much of what vitamin to take has to be made by the individual, knowing that there is no proof they will help at all! And do let your doctor know what you are taking...
On gene therapy: A very exciting "gene therapy" approach under study today is the idea of "gene silencing" by means of "RNA interference"--a recently discovered cell mechanism that has the ability to stop a gene from being expressed. Delivering the interfering RNA to the brain cells at the right time is the trick--and proving that the interfering RNA only blocks the gene of interest and not any other gene...Stay tuned, it is an exciting possibility!...
If you are going to have any chronic disease, whether it is HD, diabetes, or Parkinson's, you will do better if you a) eat right, b) sleep well, c) exercise regularly (especially if you have a movement disorder), d) engage in activities that you enjoy or that make you feel good (which for some people includes participating in research), and e) have good spiritual health--acceptance without resignation...
Responding to a question from Gene Veritas of the At Risk For Huntington's Disease blog: You are correct that the answers to HD may in fact be, or may quickly lead to, much better answers for other more common diseases like PD, Alzheimer's, and ALS. Just as is the case for cancer, there are similarities (and probably some differences as well, but let us focus on the similarities for now) between different types of neurodegenerative diseases. So a drug that slows down nerve cell degeneration in HD may also slow down nerve cell degeneration in AD or PD too. There are likely also to be unique aspects to each disease, so there may be treatments that are special for one or another disease that would not work for the others.
In addition, if we want to start treatments very early in the course of the disease, perhaps even before the doctor can clearly diagnose the disease, then the best disease to study first is HD, as we have the ability to know in advance who will one day develop HD. We do not yet have that ability for PD or AD. But if a treatment slows HD in the very earliest stages, then maybe it would do so also in the other diseases....That is an exciting thought!...
A comment on giving birth to a child that might have HD: On the other hand, music in America would not be the same had Woody Guthrie and his son Arlo not existed, or if my many patients who are successful doctors, lawyers, teachers, mothers, artists, children, etc etc etc not existed. One could even argue that HD is part of what gave Woody Guthrie his creative genius.
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As they say...read it all.
Posted by Dave at September 29, 2005 06:28 AM
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