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I'm saddened to say that this "association" is not what it represents. It is simply a front for those that wish to harm our children with out dated medical practices. This group is a front for others and not themselves. Sad but true. Most "associations" are non profit but not this one because they don't want their records revealed or disclosed so people would know the truth about their operations. ... See MoreSee Less

3 days ago  ·  

Hey everyone. So I was diagnosed at birth and havent had many problems but today I had some weird palpitations going on. Everytime I breathed in it would flutter and when I breathed out the same thing happened. Any idea what this is and if I need to get it checked out? ... See MoreSee Less

1 week ago  ·  

Anyone here ever take cough syrup with codeine & promethizine in it? I'm leery it will cause arythmias but the er doctor told me it was safe. Any thoughts? ... See MoreSee Less

2 weeks ago  ·  

www.facebook.com/video.php?v=453801084795203 ... See MoreSee Less

3 weeks ago  ·  

Hi friends. I would like your feedback on fatigue. Last week I almost felt like my old self. I was able to have friends over for dinner, the next day I went to a charity luncheon. But by Sunday I could feel I was increasingly getting tired. I saw my wonderful cardiologist at the HCM department on Monday and asked him about being tired and he said he only knows about fatigue after exercise. I told him that it is discussed on several social media sites I am on, so I was surprised at his answer.

I went to be last night for 12 hours and I am still exhausted today.

What do you do to get your strength back and what does your doctor say about fatigue?

Thanks.
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4 weeks ago  ·  

Training available to help identify those at risk for Sudden Death. www.youtube.com/watch?v=dwsya0Dv3T0 ... See MoreSee Less

4 weeks ago  ·  

HCMA policy on Facebook post on research topics. Due to the regulatory and Internal Review Board oversight of clinical research and based on our sincere wish for strong scientifically sound research the HCMA will be following the following procedures with regards to clinical trial notifications:
1. Informational graphics and or simple text with basic information on the trial and links to clinicaltrials.gov or HCMA website containing basic information will be given on Facebook.
2. Comments about individual participation is discouraged, as we do not want to appear to applying "peer pressure" to have others participate.
3. Questions you may have should not be post to the Facebook page, but can be emailed to the study coordinator OR you can call the study coordinator and ask any and all questions directly. The HCMA will not be fielding any questions, they are best directed to the study coordinator.
4. If questions or comments are posted, they will be deleted. Please do not take offense, it is being done to protect the integrity of the research.
5. We discourage posting on personal Facebook pages specific information about participation in clinical trials - until the final data has been published - again to protect the integrity of the research. (your HCM friends may make choices for their participation, lack of participation or disclosure of symptoms or benefits from what they read others have encountered).

Lastly, the HCMA wants to state that we encourage each HCM patient and family to be actively engaged in research when it is viewed by them and their HCM specialist to be appropriate. Together we will build a better future for those with HCM and we hope you understand the need for this post. If you have any questions please do not hesitate to contact the HCMA at 973-983-7429
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1 month ago  ·  

HCMA Community

I know I don't have HCM anymore but I have a few questions about furosemide, when I take it if my weight is up I will take an extra one, if I take an...

Hello Everyone I havn't been on the website for quite sometime to comment because after my myectomy in 2005 I have been doing great except for non...

Just wanted some feedback from some of you post myectomy veterans out there. The surgery went well and was 8 days in hospital afterwards as I had...

Following is a copy of my most recent examination reports. Please take a look. Maybe I don't have HCM...What are your thoughts on the following...

NOTE: My eyes glaze over with any kind of tech talk, so even if I might be familiar with a tech term, chances are I use it wrong. I would appreciate...

http://www.seattlepi.com/news/crime/article/DA-Cardiologist-2-others-accused-in-Long-Island-6201279.php Hoping none of our members were going to...

Hi, Many members in my family have the TNNT2 gene for HCM. We have had several family members go into cardiac arrest and/or die from this. Both my...

Just curious. I was told that I could now come off the meds, after a year on Sotalol. I remained active under docs supervision. I have an ICD, but...

I have been trying to get insurance to approve genetic testing for the past year and a half and I am about ready to pay out of pocket! There is no...

I begin by expressing my appreciation for this forum – I have benefited enormously from all that I have read here (and I have read a LOT!) – and to...

Hi Folks, My name is Bonnie and I was recently (January) diagnosed with HCM and am scheduled for a myectomy on April 16th. Had genetic testing done...

Since I got my ICD week before last, I have been lamenting that I can't use my left hand shirt pockets (almost all men's shirt pockets are on the...

Hay everyone. Sorry I haven't been on here much.. Life has been a rollercoster the last few months so I don't have much time to get on. My step...

Has anyone heard the term _*"High-output cardiomyopathy"*_ and if so do you know what it means? I have Googled it but no answers.

Good Morning! I very recently tested positive for the family HCM gene. I have a family history of SCD. I have not been diagnosed with HCM...