For My Aunt Edie

I am a wife, I am a mother, I am a daughter, I am a sister, I am a niece, I am a person affected by HHT and am passionate about the cause!  I am focusing on HHT awareness today.

No one is ever quite prepared for the loss of a loved one, especially if that loved one is a younger age. This was the case with my Aunt Edie. She was 46-years-old when she was taken from us much too soon by HHT. My aunt was diagnosed with Hereditary Hemorrhagic Telangiectasia two years prior, by way of genetic testing, and a few months later was diagnosed with Pulmonary Hypertension.PH is classified as having high blood pressure in the lungs, where the blood vessels become damaged and/or narrowed and the heart has to work harder to pump blood through them. If you have HHT, you are at risk for PH, clinically labeled as HHT-associated PH, something we learned too late when it came to Aunt Edie.

I am a believer of researching, raising awareness and educating myself and others in order to better understand HHT and the effects of it, PH is no exception. Throughout my research, I constantly read that it’s not known how many people have HHT-associated PH, but it’s estimated to affect one in 15 percent of families with HHT2 (ALK1 gene modifier).  In HHT1 (Endoglin gene modifier), HHT-associated PH is estimated to be much lower.

I bring this up, because it’s important to know there are different types of HHT. Unfortunately, in my Aunt’s case, she was diagnosed with HHT2 much too late in life.  Members of my family, including myself, have also been diagnosed with HHT2 and that number, that estimate, that one in 15 percent of families with HHT2 scares me every single day.

I wear my Pura Vida Cure HHT bracelet to remind me of this – that life on this earth is much too short and not to take any of it for granted… to give me strength, faith and courage.  Keep pushing forward, and always keep the faith.

bikes

In an effort to raise funds and awareness, I am organizing a Cure HHT Ride at 11:30 am on August 6 at Rev’d Cycling Studio in Patriots Place in Foxboro, MA.  This charity ride will be in memory of my beautiful Aunt Edie.

I have a big goal, and one that I know we can meet if we all come together as an HHT family, and make the event a success! All funds raised will be donated directly to Cure HHT. 

Join me while we “sweat”’ it out to some awesome music for a 45-minute spin (indoor cycling) ride.  If you can’t make it for the ride, please know that every $1 donated counts, no donation is too small, to keep raising awareness for HHT.  With your help, we will be one step closer to finding a cure soon! 

5 Comments

  1. Ruth Cokee on July 20, 2016 at 4:40 pm

    I have HHt and also diagnosed with Idiopathic Pulmonary Arterial Hyphenation.

    • Tania on June 1, 2017 at 3:08 pm

      Hi Ruth. Sending prayers….

  2. frifris on April 21, 2017 at 11:44 am

    I’m very sorry to read about your aunt. 🙁

    I knew I had HHT, but I never knew about the consequences, neither did my (former) GP, never did he tell me to do research or did any research himself. To him, it was a disease that could pose difficulties for older people, but not at my age. So wrong! In October 2016, I was diagnosed with heart failure because of pulmonary hyptertension (I’m 44). Currently I’m on the waiting list for a (high-risk…) liver transplant, but also looking into a treatment with Avastin. It seems to me as if the more difficult complications of HHT are often found in females, at least many of the few transplanted people that can be found in publications seem to be women. Haven’t really found anything on this.

    All the best to you and thanks for spreading the awareness!
    There is an HHT support group in Germany, as well, I’ve recently become member and if you are ever interested in news from the other side of the Atlantic, let me know, I could try and translate, as well.
    The facebook group can be found on https://www.facebook.com/groups/1889282361305763/ – I’m not on facebook myself, and the page is in German, but maybe it can be of use to you?
    Sorry that I am posting a comment like this on a page for your aunt.

    Connie

    • Tania on June 1, 2017 at 3:11 pm

      Hi Connie. Thank you for your comments. I am so sorry to hear of your diagnosis.. sending prayers to you… You are correct, raising awareness and getting tested is the first of many steps. Many in the Medical community, in the US and abroad still do not know about HHT, it’s unknown to many. We must continue to raise awareness and keep fighting for a cure to be found. I pray that you receive the transplant you need and that it makes you whole and healthy once again. Keep the faith, keep fighting!!

  3. inter- on December 23, 2017 at 12:01 pm

    You are so interesting! Ӏ don’t think I have read ɑ single thing like that before.

    So good to disϲover somebody with some original thoughtѕ on this topic.
    Serіouѕⅼy.. thanks for ѕtarting this up.
    This web site is ѕomething that is neeɗed on the internet, sоmeone
    with some originalitү!

Leave a Comment