HCM-ers: Introduce yourself or just say hi

Leo,
HOCM or HCM can be at any age. I would suggest that you try to find out who in your family has this heart disease and get tested with an Echocardiogram.
Jim

@jachrist thanks. I have reminded my siblings so they will have to take it serious. My maternal side thinks its my paternal side with whom I have no contact.

People travel to Mayo from all over the world. Does anyone know how to contact the people who take a referral for surgery - from reviewing a case to financial help - before the concierge service can do their part? (Somehow this post originally appeared as a response to another topic. Must've not been paying attention.)

Hello @walkinggirl -

Following up on your question in regards to referrals for surgery. Have you already been in contact with the Concierge Services but they said you needed an appointment first? You can self-refer by requesting an appointment at Mayo Clinic, or you can have your current provider request an appointment for you as well. http://mayocl.in/1mtmR63 to get started.

You are most welcome. As you know an angeogram is non intrusive so relatives of people with HCM have no reason not to be tested. If not for themselves, then for their own heirs. We need to end this hereditary disease.

Hi jachrist,
I know l that the tests ate non intrusive however most of my siblings are in the UK and the US including three who are either nurses or nurse aid. I can't force them. I don't have kid as yet so Dr says I'll have to go through some procedures to eliminate the transmission to future heirs. I'll see if there is a thread on this
Thanks.

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

Hi ochmnot 22,
Please explain "I'll have to go through some procedures to eliminate the transmission to future heirs." Do you mean for HCM/HOCM? It's genetically passed on and I am not aware that there is genetic engineering available as yet to change the genes responsible for this condition, if they can be found (in my case, not yet). CRISPR technology looks promising.