FarmGirl32
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FarmGirl32, October 19,  2020  11:21am EST

Endothelial dysfunction, any other females living with this?

hello everyone,

 I have been diagnosed with severe endothelial dysfunction, which means the lining of the small vessels of my heart is below normal functioning level and not getting blood and oxygen to the rest of my body making my heart work much harder than it should. My cardiologists say I am one of the youngest they have seen this in as I am only 32 and due to the degree I have posibily had it for a year or two, I was diagnosed this past may via heart catheterization. Does anyone else have this type of heart disease? If so, how are you managing it? Thanks!

4 Replies
  • AHAASAKatie
    AHAASAKatie, October 20,  2020  9:19am EST

    I am so sorry you are having to manage this! I am not familiar with severe endothelial dysfunction and I have a few emails out to our medical side of the house to learn more about it so I can try and direct you.

    I know it is hard to have a serious condition so young in life. My youngest daughter has a serious joint connectivity disease and has struggled through her teens with finding people who can relate and support her. 

    What I tell her, and am sharing with you as well, is that survivorship is hard, but that you are not alone. Here on the Support Network, you have a whole community of people to support you, even if our conditions are different, our emotions are similar, and we care. 

    Best Katie 

     

  • AHAASAKatie
    AHAASAKatie, October 21,  2020  9:19am EST

    Good morning, I did hear back from our medical team, and deciding on the best way to create a condition management program is really a conversation with your medical team. Please know that even with this response, we are here to support you. 

    Best Katie

  • Elizabeth17
    Elizabeth17, October 22,  2020  9:02am EST

    Hi - I do not have this condition, nor have I ever heard of it, but if you are on facebook there is a great support group for men and women with cardiovascular disease that is administrated by Go Red For Women at American Heart. Its called #GoRedGetFit.

    There is also another awesome page on facebook for men and women called "Heart Health Connection". The support from other heart survivors on that page is remarkable! They talk about all kinds of heart and vascular conditions. You can message them and they will put your question out to the rest of the page!

    I wish you the best of luck! The best thing you can do is learn everything you can about your disease and talk to your physicians about any questions you may have that are specific to you, because we are all different!

    All the best,

    Elizabeth Beard

     

     

     

     

  • AmbassadorC
    AmbassadorC, October 25,  2020  7:13pm EST

    Hello Farmgirl32, and welcome to the support network!  You are among a community of heart warriors that are each other's strength for the journey ahead.  While we are all different in terms of our individual heart journey, what unites us is the common thread of the feelings that often go along with a heart diagnosis.  This includes fear of the unknown, the "what if's" and the "why me's" that often accompany initial diagnosis.  For me, while I am a heart valve patient, I too felt the same feelings of trying to search for someone who was my age, and how they were dealing with the diagnosis.  For me, upon being told that I had a leaking valve and would require open heart surgery as such an early age, (30's) I immediately thought to myself, how can this be?  Open heart surgery is for my grandparent's age group, not me, who is healthy, active and young.  I get it, it's very scarey and unsettling at best.  While I am not able to offer you anything specific on your diagnosis, know that we are hear for you.  As I mentoned, we are all different, but yet connected by the very same concerns and fears of the unknowns.  Please feel free to reach out without hesitation with any other concerns you may have.  We are united as one beat! 

    With heart, 

    Ambassador C 

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