[What the HCMA means to me ....]

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

Date: 08-24-02 15:04

Well guys here we go. If you want added services, more information, greater access to medical experts, more support, more meetings, more laughs and more HCMA then I am asking you all for a little favor. We have just submitted several major grant proposals and I think it would be wonderful if those who will be evaluating our requests could see ..in your own words... what the HCMA means to you. So post away and tell us what the HCMA means to you and feel free to tell us what you would like to see in the future.

Thank you!

Lisa Salberg

I have reposted the as the older one if quickly leaving the front page as so many messages have come in...post your stort here OR the other posting..no need to duplicate, and THANK YOU to all of you who have already shared your thoughts!


[Re: What the HCMA means to me ....]

Author: Reenie Smith (---.snbrca.adelphia.net)

Date: 08-25-02 17:26

The HCMA is a wonderful fount of information to me. My husband is the only person I know who has HCM and I sometimes feel like we're adrift without an anchor. This site and its wonderful message board has helped me understand HCM more fully and to feel like we aren't the only ones in the world who are different. I pray that this program will continue to give such good advice and support.

This program is so far reaching, too. I have noticed that many posts are from people affected by HCM in other countries. I myself found this site while in Japan. Such is the modern world with modern technology! Please keep up the good work.


Reenie Smith


[Re: What the HCMA means to me ....]

Author: Ada (---.netcarrier.net)

Date: 08-25-02 20:06

Dear (grantmaker),

I truly believe I owe my life to the HCMA. I was diagnosed with IHSS at the age of five and, for over twenty years, battled with doctor after doctor to find effective treatment. Thanks to Lisa Salberg and the HCMA:

· I feel better than ever. For years, I struggled with symptoms despite high dose medications. In addition, the medications caused side effects ranging from fatigue to digestive problems to memory loss. Doctors rarely acknowledged my complaints. Once, I even had a nurse tell me “it’s probably just stress” after I blacked out from what I later learned was a life threatening arrhythmia. The HCMA helped me find a specialist at the Mayo Clinic. I underwent a septal myectomy and am finally on the road to finding the right combination of doctors and treatments.

· I have become my own advocate. For many years, I trusted my doctors and came to fear “the look” they gave when they were not quite sure what to do about my symptoms or not quite sure I really had symptoms. My doctors made me feel as if I had no options. Eventually, I refused to believe this and began my own investigation into IHSS. After finding the HCMA, I gained a much deeper understanding of my disease (including the accepted name--HCM) and the lack of quality information about HCM in both the medical community and general public. I learned that my symptoms were indeed real, and that I had many options. I learned that I deserved better treatment than what I was getting.

· I have a support network. For most of my life, I was the only person I knew with HCM. I often felt like a side show attraction. Those who knew a little something about HCM would ask me to sit, squat, and stand so that they could listen to my heart murmur change—but they never asked how I felt. One of the most difficult things about HCM for me is that I do not look disabled, yet I have so many restrictions. It was very difficult to explain to college friends that I wanted to stay in at night because I was exhausted from being in arrhythmias all day or to a high school gym teacher that more intense aerobics and weight lifting could be harmful to my heart rather than helpful. My world opened up when I started talking to other HCMA members. I now have this network of people from around the world that know first-hand what I am going through.

· I am finally happy. After much prayer and searching, I found the help I needed through the HCMA. I spent over twenty years battling depression, exhaustion, learning difficulties, and body image issues. I knew my medications were to blame. I thought I could control these side effects with exercise, various diets, meditation…but nothing worked. Since my surgery, I am a brand new person. I am now on better medications at lower doses. I am no longer depressed. My mind works more effectively. I have learned to respect my body for all it has endured. I am more assertive, energetic, confident, and—most important—joyful.

I am in awe every day at how blessed I am to have found Lisa Salberg and the HCMA.


Ada Bickert


[Re: What the HCMA means to me ....]

Author: Mary Sharp (---.proxy.aol.com)

Date: 08-26-02 22:40

I think today absolutly answered what the HCMA means to me. I finally got to meet someone who has HCM other than myself! It was made possible by the wonderful people of the HCMA especially Lisa Salsberg and Sarah!

My meeting with Matt here at Disney helped me to realise I am not the only one in the world with this wonderful condition. I don't know what road my life will take due to this but I know it is alot better just because of the gang here at the HCMA. There have been days I have just wanted to give up but a kind word goes a long way especially when you are feeling absolutly horrible. So anything that can be done to help the HCMA will be well worth the investment. I would love to see more AED's and even more knowledge out in the world would make a big difference. If it saves one life isn't it worth the time and money?

Mary S.