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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?

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4 hours ago  ·  

Training available to help identify those at risk for Sudden Death. ... See MoreSee Less

5 days 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 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 week ago  ·  

UPDATE on NORPACE CR. The HCMA has just been advised from Pfizer that both the 100mg and 150mg formulation are available and distribution will begin next week. We are thankful to our friends at Pfizer for keeping us informed on the availability of Norpace CR, an important medication for the HCM community. Please contact your pharmacy in the next week or so to check on availability in your region. ... See MoreSee Less

1 week ago  ·  

any suggestions for genetic testing locations in OC and LA county california ... See MoreSee Less

2 weeks ago  ·  

Dr Sharlene Day discusses athletic participation in HCM patients. A controversial topic we need to learn more about. A new NIH funded trial LIVE HCM will help clarify this important topic. The HCMA is a partner in this exciting research.#acc2015 (2 photos) ... See MoreSee Less

2 weeks ago  ·  

Dr Barry Maron discusses his recent publication on improved outcomes in HCM #ACC2015 #4HCM (3 photos) ... See MoreSee Less

2 weeks ago  ·  

Happy Birthday Dr Harry Lever Director of the HCM program at Cleveland Clinic! We wish you a year of good health and happiness. Thank you for all you do for so many all year long. ... See MoreSee Less

2 weeks ago  ·  

I was diagnosed with HCM 18 months ago, took the diagnosis well but the more I read the more I start to become concerned! ... See MoreSee Less

2 weeks ago  ·  

HCMA Community

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