Takotsubo Cardiomyopathy

[DebraMcCreath]

Hi everyone, my names Debra and I'm new to this group.

I was diagnosed with Takotsubo Cardiomyopathy in March 2016 and sadly again in November 2017 on learning that my brother had passed away.

Since my last episode in November 2017 I've gone on to develop heart failure which as affected my whole life, but hey ho, their are people a lot worse off than myself.

I've also agreed to take part in in research that's currently underway by Aberdeen Cardiology unit. That's my story

[Milkfairy Heart Star]

Hello Debra

Welcome to the forum.

I am sorry to hear that lightning struck twice for you with 2 episodes of Takostubo Cardiomyopathy and this has effected your heart muscle's ability to pump as well.

Are you taking part in Prof Dana Dawson 's research?

There are lots of amazing people on the site who I am sure will be along soon to share their experiences of living with heart function issues.

[DebraMcCreath in reply to Milkfairy]

Hello Milkfairy,

Yes I'am taking part in Prof Dana K Dawson's research. I'm more than willing to take part in any research that could help others suffers in the future.

I'm fortunate enough to have amazing support from my GP to Heart Specialists, and after a few years of medication tweaking, I now feel that I'm in a better place.

I feel the support of others who have previously experienced heart function issues, can be invaluable to those who have been diagnosed with the condition,

[Milkfairy Heart Star in reply to DebraMcCreath]

It is great to hear that you are involved with Prof Dana Dawson's research.

Her work is so important in raising awareness and breaking down the misinformation about the condition.

Takostubo Cardiomyopathy, Spontaneous coronary artery dissection, Microvascular and vasospastic angina are a group of Non obstructive coronary artery diseases that disproportionately effect women.

Are you aware of Cardiomyopathy uk? They are another useful source of information.

cardiomyopathy.org/takotsub...

[dunestar]

Welcome Debra.

I first learned about Takostubo very recently at the patient-led conference on INOCA (ischaemia with non obstructed cardiac arteries) where Prof Thomas Luscher from the Royal Brompton gave a presentation.

This is the link to his presentation if you would find it of interest. (Apologies, I don't think the link works but this is the address) inocainternational.com/vide...

[Milkfairy Heart Star in reply to dunestar]

Hi Dunestar

Prof Dana Dawson is a probably one of the most currently active researchers carrying out research into Takostubo cardiomyopathy.

Her recent research is suggesting that Takotsubo syndrome is associated with how the body responds to inflammation.

Her team is also researching a possible new treatment.

bhf.org.uk/what-we-do/news-...

[dunestar in reply to Milkfairy]

Thanks Milkfairy. Interesting stuff.....

[Jeekee9]

Hello Debra, I hope that you are still doing well. If you get a chance, please let us know how you are doing. Best wishes to you.