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I would love some feedback I am 47 and just over a year ago had a septal myectomy due to HCM. My very athletic 14 yr old has the gene but no symptoms and structurely her heart looks fine she had had echo. One dr is saying no sports. Another dr is saying sports ok if she gets echo yearly and no thickening. My daughter is gifted athlete and plays all year long with no symptoms. My husband and I want to do what is right for her. It will devistate her to quite sports, but her health comes first. I played sports in HS with no issues. My HCM symptoms started in my thirties ... See MoreSee Less

3 days ago  ·  

We hope you were able to see HCMA Founder Lisa Salberg on CNN today. Link will be posted when available. ... See MoreSee Less

2 weeks ago  ·  

Tune it to CNN tomorrow morning at 8:40am eastern time to see HCMA Founder and CEO Lisa Salberg LIVE discussing the ground breaking laws in NJ to protect and identify children with HCM and other forms of heart disease! ... See MoreSee Less

3 weeks ago  ·  

I know I saw Lisa Flanigan Salberg(the queen of HCM) is out of town... I have discussion question. I'm mind boggled right now. I won't post names of centers or drs, but I recently went to the dentist with an absessed tooth that I have chose to have pulled. He gave me penicillin before coming and referred me to an oral surgeon to have it pulled. I try to read and learn as much as possible so I can be my own advocate. With that being said I thought and have always been told they recommend you pre medicate with antibiotics before dental work. So I send a message to my cardiologist to confirm and get any other recommendations since that is also what the oral surgeon asked me to do. I'm in complete shock this morning because my cardiologist had his nurse call me and tell me no I don't need to take any antibiotics before or after having teeth pulled. Am I crazy or does this not totally go against everything I've been told in the past!? ... See MoreSee Less

1 month ago  ·  

Which address do I use to send a donation check to?
HCMA Offices: 18 E. Main St - Suite 202
Denville, NJ 07834
Management Office: 1450 Western Ave - Suite 101
Albany, NY 12203
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1 month ago  ·  

Join us in Los Angels at UCLA for a one day patient meeting: To sigh up please email ... See MoreSee Less

1 month ago  ·  

OK I DONT POST MUCH BUT HAVE A QUESTION ?? oops caps sorry all , I am asking since I have never fainted nor had symptoms of HOCM , or HCM , I felt burning in my feet then went up in body to my head like my head was heavy, I quickly laid down on floor to CONTROL my self if I could,? till that feeling settled. I don't know if I was going to faint or have sd but it has never ever happened to me . I have hormone problems lately changing in my body doing hot flashes and dropping levels to my doctors concern however due to hocm I can not take hormone replacement . but a thyroid med is being prescribed to me next week by the endorcidest (spelling) . I do NOT have a icd because my heart team wanted find out more into my health issues before sedating me on operating table and dangers of it with hormone fluctuating daily. what im asking here is this a sd MAYBE and I got lucky or is this a bp drop or a arrythmia ? I was breathing fine no breathing problems no shortness of breath . no pain . but the chest pain hurt AFTER the episode like an hour after, I also had been by myself and non one to come help me. I did end up in hospital got taken there, only to be told call Toronto I am 4 hours away. of course our hocm, hcm people here know to well, this stuff don't show up in ekg or in blood work . so just what happen to me can someone help me out here till I get a call from Toronto Monday as its a weekend frown emoticon this happen yesterday afternoon and im still very tired I can sleep sleep sleep if I let me ... See MoreSee Less

1 month ago  ·  

I see Johns Hopkins is doing research with Apple for epilepsy. My son has epilepsy so I am keeping an eye on this research using an App called epiwatch. It uses the eye phone and the watch. Anyone know if they are doing any such research for HCM using this type of technology? If they ever do I want in! ... See MoreSee Less

1 month ago  ·  

Hello, my name is Jessica Logan of Lakewood Nj, I am a 23 yrs old full time student. I am desperately trying to spread my story, and this looks like the perfect place to seek help, and it appears that you are right in my back yard!

September 22nd 2015 my 52 yrs old mother was planning on going back to school. For two years prior, we shared a room in a crime-filled motel. One bed, no kitchen. However we finally moved in to our one bedroom apartment, and we were very happy. She was unemployed for months; working on her mental health and treating her diabetes. She had recently dropped 45 lbs and she was ready to take on the world. Her schooling was through WIC, and she would be becoming a certified home health aide and CNA.
On September 20th my Mother, Janet Kissam went in to sudden cardiac arrest. Everything was silent for about 15 minutes (which if very strange for my mom), suddenly my boyfriend and I hear moaning. We call out to her. Just moaning. Knock on the door. Just moaning. Go in. Try to "wake her up".... Just moaning. We called 911 and started CPR. Medics came and brought her back. They gave her hypothermic therapy, ran many tests, and kept her in the CCU. my boyfriend and I slept at the hospital for an entire week, praying for a miracle.

Unfortunately, my mom never woke up.

Hypertrophic Cardiomyopathy, the doctor told us. Those words poison my thoughts by day and hating my dreams at night. "Your mom was dead for about twenty minutes. The HCM caused an arrythmia her in case, was life threatening. These machines are keeping her alive and there is no brain activity. I'm sorry."

She passed at 12:59 on September 27th 2015.

My mom was a bright and brilliant person. She raised me all on her own, and I am her only child. I will not allow my mother to pass so tragically and suddenly without using it to send a message.

I am reaching out to you to see how I can help spread awareness and get involved.
I am getting screened next week, so is the rest of my family.
Unfortunately I don't have money to give, because I had to start a fund for myself. It's an awful place to be in knowing that even death is so expensive, and no one wants to help.
I am looking for volunteer work, and a place to share my story where the world can see.
Although I'm hoping my treat results come back ok, I am still preparing myself for the worst as well.

I am NOT asking for a donation, but I have a lot of my story and more stories on my mom posted on my gofundme page.
^that's the end of the link if you want to read more
I am planning to make a non donation blog page for my mom and HCMA, but I'm waiting until I'm done with school.

Please have someone contact me, I'm trying to grieve and I need to help.
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2 months ago  ·  

HCMA Community

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