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  • Contacted my state rep.

    [Contacted my state rep.]

    Author: Debbie (---.ras11.coden-le3.alerondial.net)

    Date: 10-07-02 00:08

    Hi,

    I haven't written in yet, but am a faithful reader of the message board.

    I was diagnosed w/HCM (or IHSS, as it was called), about 4 years ago. I received a defibrillator in Feb., after passing out at a public event. I lost my mother to HCM last October, due to complications due to a heart transplant.

    I am so heart-broken after reading the messages about the death of Jason Wogick, and then the messages from his sisters.

    I am so sorry for what they and their family are going through.

    In fact, reading about his death prompted me to write my state representative, Joel Hefley.

    I would like to share a portion of my letter, in hopes that more people will start contacting our elected officials, demanding legislation to start protecting our young athletes.

    Dear Mr. Hefley,

    Thank you so much for taking the time to read my email. I know you are a very busy man with many demands on you, and I appreciate that you are willing to listen to me.

    I am writing you concerning a health condition known as Hypertrophic Cardiomyopathy, or HCM.

    First, I should tell you that I am writing to you as a person afflicted with HCM, and the information I am including is my understanding of my disease, certainly not a Doctor's perspective on it. For more complete information, I invite you to visit the Hypertrophic Cardomyopathy Association website, at www.HCMA./heart.com.

    I was diagnosed with the disease about 4 years ago, and last October, lost my mother at 61, to the disease. She received a heart transplant on October 4, 2001, and died on October 19, 2001, due to complications of the transplant. In February, I passed out at the Pepsi Center and ended up at University Hospital in Denver. Because of my "sinkable episode", as the doctors called it, and family history, I received an implantable defibrillator.

    As you may or may not know, HCM is first a cellular disease of the heart. From what I know, there is a 50% chance of the children of people affected w/ HCM to manifest it in their life. The tricky part, however, is that the disease may not manifest itself until the later teen years.

    To put it very simply, in patients afflicted w/HCM, the cells of the heart don't line up properly, and this causes a myriad of other problems. Among others, one of the biggest is that the septum, or the wall between the chambers of the heart, becomes enlarged. This, in turn, can affect blood flow to other parts of the body. There are many symptoms that may range from dizziness, heart palpitations, breathlessness, numbness or tingling in extremities, head rush upon rising,and many others. Not the least of which is sudden death. Let me repeat that. Sudden death! At any age!

    I believe that the current statistics are that 1 in 500 people are afflicted w/HCM. The scary part, Mr. Hefley, is that we are losing athletes of all ages to this disease at incredibly rapid rates. Many times, when you read of a football player, basketball player, soccer player, track star, etc., dropping dead on the playing field, it is because they had undected HCM!

    HCM is relatively easy to diagnose via an echocardiogram. As far as I understand, in fact, an echogram is the only reliable way to correctly diagnose HCM. The doctors must have a picture of the heart to ascertain what is going on inside of it. It does not show up on EKG's, or other, cheaper methods of heart screenings.

    Sir, how many young athletes have to drop dead on their playing field before someone important, like you, will take notice? There has got to be some kind of legislation to protect people who don't know they have HCM! I would like to see some kind of mandatory testing for athletes.

    If you would visit the HCMA website, you might begin to understand the huge amount of people who are themselves dealing with HCM, or have a family member dealing w/it, or are dealing with the death of a loved one from complications of HCM. In fact, on the message board today is a posting about yet another athlete who died from undiagnosed HCM. There are also messages from his sisters, asking what needs to be done to start saving people from dying suddenly due to HCM.

    The association's president is Lisa Salberg, who lost her sister to the disease. There are several doctors and experts associated w/ the site, and you could get so much more information from it, than from me.

    Mr. Hefley, please, please visit the site, read the message board, including past messages, call Lisa Salberg, learn about the disease, and enact some sort of legislation to save our young people.

    Again, thank you for your time and consideration.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Contacted my state rep.]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 10-07-02 10:29

    Dear Debbie,

    As Jason's sister I thank you so much for your time to write your local representative. I have been doing everything I can possibly do since I lost him on Septemebr 27,2002. You have inspired me to write my local reps and anyone else who will listen. I think the key is to educate everyone. The more attention we can give this the better chance we can help save someone else's life. I am sorry for the lose of your Mother. It is to bad the only way you knew you had this diesese is by losing your Mother. She would be proud of you for reaching out to others. Thanks Again!

    Sincerly,

    Julie Petitpas

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Contacted my state rep.]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 10-07-02 15:33

    Great start guys!

    I think I may be working up a sample letter for people to use in the near future for this kind of thing. I'll keep you updated on that.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Contacted my state rep.]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-07-02 15:54

    Sarah ... once you get the sample letter available I would be glad to send it out as a mass email to as many legislatives as possible nationwide!



    Erica

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Contacted my state rep.]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 10-08-02 09:46

    Debbie,

    I was going to sit down and right my state representatives a letter o my family's behalf. I then realized I have no idea how to do that, especially email. Can you help?

    Julie Petitpas

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Contacted my state rep.]

    Author: Debbie (---.ras11.coden-le3.alerondial.net)

    Date: 10-09-02 00:02

    Julie,

    I didn't know how, either, but just entered my Rep.'s name on the search line. It got me to his website, and then the website directed me after that.

    Good luck, and please keep us updated on your progress.

    I am convinced that this is the way we need to go.
    NOTE: This is a post from the previous forum message board.
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