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  • gene HDAC9

    [gene HDAC9]

    Author: Nancy Sarvis (---.access.naxs.com)

    Date: 08-23-02 22:16

    Found an interesting article about this gene (or mutation or lack of it) at www.heartcenteronline.com. Researchers at the University of Texas Sothwestern Medical Center Published this article in 8/23/02 issue of "CELL". It states that in mice, this gene functions to restrict hypetropic growth in heart muscles. It went on to say that people with cardiomyopathy are going to be screened for this gene. I know this is not a cure-yet. But it does bring a glimmer of hope to the possibility of a cure in the future. It also tells us that they ARE working to find one!

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    [Re: gene HDAC9]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-24-02 00:21

    Over a year ago Dr. C. Siedman of the Brigham & Womans Hospitalm / Harvard Boston reported that in mice with a particular mutation (forgive the lack of proper documentation it is about 12:10am way past my bed time!), mice who were given a calcium channel blocker prior to the appearance of hypertrophy did not develope the same degree of hypertrophy as the same mice in the litter that were allowed to progress without medication - -These mice were geneticly engineered so they were "all the same" and had the same environmental issues. SO.... it appears that in those with some gene mutations we may not be able to "STOP HCM"...but we may be able to "limit hypertophy"...heck of start if you ask me.

    UNDERSTAND this is research only and MICE not humans...so we need more time, research and a little luck will not hurt!

    Yes...the future will hold many things for us, but do not think it will be next month...it is still years away.

    Lisa

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    [Re: gene HDAC9]

    Author: Nancy Sarvis (---.access.naxs.com)

    Date: 08-24-02 07:44

    I guess at this point those reseachers are just checking for the gene in some human subjects to gather infromation on their theory. I realize they are probably years away from being able to transfrom this gathered information into a cure. It is very encouraging to know that research is being done that may benefit our future generations.

    Nancy

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    [Re: gene HDAC9]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-24-02 09:29

    Nancy - -I could not agree more!! This is very encouraging work and with the teamwork between the researchers and th families with HCM we can make amazing progress.

    Just a note of caution IF you are entering into a study (research) genetic or otherwise make sure you have a complete understanding of all details including privacy of data and time frames. Further if you are entering into a new treatment option or asked to participate in a genetic study and you are at a research center ASK if it is theory or standard of care treatment you are receiving, make your choice is based on all the facts. DO NOT feel that you must participate in trials of new procedures/meds, but if you wish to participate be informed. It will make the experience much better for all.

    Lisa

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    [Re: gene HDAC9]

    Author: Nancy Sarvis (---.access.naxs.com)

    Date: 08-24-02 17:05

    My guinea pig days are probably over. I participated in a clinical trial that was to determine if pacemakers or septal ablation was better therapy for HCM. The pacer worked pretty well for a short tiime then all my symptoms returned. When I returned to the clinic with recurring symptoms they were not really acknowledeged as being there. This particular doctor seemed determined that the pacemaker was a success. PERIOD. If researchers don't take the results at face value, but curve them to their needs in their protocal then that information is worthless. I assumed I was being treated by a reputable doctor at a reputable clinic. I have since had very good reasons to doubt that this was so. My symptoms were severe. I was scared and the clinical trial seemed like an answer to prayer. I know that desperate people do desperate things. This experience has made me get advice on future care from knowledgable people, (like HCMA). By the way Lisa, I need to talk to you about someone to care for me when I return from Cleveland. I will call again on Monday. I'm sure that there are very good researchers in the field of HCM, I just wish the bad ones would get the heck out of the way!.They are bound to be holding up progress by publishing their results if they are only to suit themselves.

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    [Re: gene HDAC9]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-24-02 17:25

    Nancy...AMEN!

    Yes there have been problems in the HCM research community and they have confused the data and lead to many unneeded procedures and prolonged periods of disability. QUALITY IS the KEY ! Knowing where to find it..well thats where we try to help.

    Research is NOT all bad and it is needed to find the answers to our futures...but not at the expence of the loss of life or prolonged disability when known treatment options can prove useful.

    Information is the key...stay informed!

    Lisa
    NOTE: This is a post from the previous forum message board.

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