[Getting Family Tested]

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

Date: 08-17-02 13:52

I'm venting frustration with members of my family that refuse to be tested for HCM. My sons are 24 and 21 years old, (and think they'll live forever). Both have experienced a few symptoms here and there but when they are gone so is the desire to be checked. Neither have even gone to the ER when they were experiencing symptoms. My grandauaghter is 15 months old and her doctor has never been told to look for it. My 2 grandsons, ages 4 yrs. and 2months old have been screened and have not been diagnosed. My son has taken this to mean they will never have it. I have a sister that is a single mom.She doesn't see funds to be checked but has had her daughter checked. Like most of us with HCM, I look really healthy! and everyone cannot see the seriousness of this disease. I don't know how to get them to realize that this disease can be very dangerous. I'm the only one in my family that has been diagnosed and that makes everyone think I'm just a "fluke". Hopefully I am a "fluke" in my family and no one else ever does get it! I wish they would at least be tested for their own peace of mind. (It would be great for mine also). Oh well, thanks for listening.

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[Re: Getting Family Tested]

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

Date: 08-17-02 14:43

Dear Nancy,

Please e-mail their addresses to the HCMA office so we can send them the HCM informational packets and you should give them all the HCMA's Patient's Guide to HCM for Christmas.

I wish you all the best of luck with them,

Sarah

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[Re: Getting Family Tested]

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

Date: 08-17-02 17:44

Nancy,

I totally understand your frustration. Our family is the same way. My husband has a sister and a brother. His sister has been screened, as has her daughter. She plans on re-screening every few years just in case.

His brother isn't interested in the least about knowing whether or not he has HCM, or his kids. They tested his son as a teen because of shortness of breath, but since he screened clear then, they think they don't need to retest later. I've sent the information package from the HCMA to their family doctor, but don't know if it will change anything.

My husband's parents had echos for other reasons about 10 years before my husband was diagnosed. They were clear then, but don't intend to retest themselves because they are older and they don't think anyone else in either of their families would bother to get screened.

Now we find out that last weekend his grandma, who will be 90 in Nov, fell and broke her hip. At first they thought she had fallen, (she'd fallen several times lately) because she was trying to walk too fast. While she was in the hospital they discovered an irregular heart beat. Now they are under the impression that the falls are cardio related. They think she's graying out and falling. While in the hospital they had to defibrillate her before they could do surgery to pin the hip. That's how bad the arrhythmia is. When they mentioned that her grandson has HCM, he said, "Hmmm, I wondered about that."

They will not test her further now because they think she shouldn't incur the cost for the screen (genetic in this case) because she's so old anyway and the rest of the family is unlikely to follow up on it. Go figure. Does someone have to die for them to wake up and realize this is an important issue!!!

Anyway, I know this has been a super long post, but I'm venting too. Good luck with your family.

Reenie

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[Re: Getting Family Tested]

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

Date: 08-17-02 21:44

Believe it or not..I too have family who will not go for regular screenings because they do not "want to", so do not feel bad. In my case I have several people that I have serious concerns about...yet they are "adults" and can make there own choices. It is just to bad that if that choice leads to an early death...There I will be with the rest of my family again...at a funeral for yet one more family member taken by HCM.

My opinion, failure to screen can be a selfish act. If they are screened and the disease is found, then they can choice to treat or not treat it. If they have children it is nearly child neglect in my opinion to not be screened - why - - If the parent has HCM then you MUST screen that child every year after age10 until age 20 then evey 5 years. If the parent has no sign and his parent (grandparent) has no sign then the screening process can end, from what we now understand. IF the parent is clear yet the grandparent is affected then the child must be screened as noted above.

All you can do is pass on the facts. You have done your part. Hopefully soon HCM will make a larger national presence and more people will know about the condition...if that happens more will be willing to be screened. Look what Katie Curic did for colon cancer..and an echo is FAR easier that a colonoscopy.

Keep trying and keep smiling!

Lisa

and hint hint to any family reading this...

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[Re: Getting Family Tested]

Author: Brian Cole (---.server.ntl.com)

Date: 08-18-02 15:17

Nancy i have only just been diognosed HCM and i have been asked by my doctor to get the rest of my family tested ,that is nearly 20 people.Most seem to be ok with it but like you the odd one or two will live forever.I live in England so there is no cost.I hope you are the " fluke" (in my case the mutant) as so do i.I will do my upmost to see that they are all tested.As i am the youngest my whole family are supporting and i am quite sure that with a little push your sons will listen to mother Good Luck !!

Brian

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[Re: Getting Family Tested]

Author: Sharon Binder (---.proxy.aol.com)

Date: 08-27-02 19:07

Can you tell me a little more about this information packet? I used to access the IHSS website sponsored by the Kanter family. Lost touch - had a pacemaker implanted 6 years ago - fair results - now battery is to be replaced. Not able to find a support group in the Los Angeles-Long Beach-North Orange County areaof California. Tried heart menders after pacemaker implant - not very helpful. Thanks for the information. Sharon