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This fundraiser ended on 09/30/10

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Help me raise money to attend the HHT Foundation International 15th Patient and Family Conference! (I'm a patient, and family too).

As some of you may already know, I live with a genetic disorder called HHT (Hereditary Hemorrhagic Telangiectasia) which mutates the capillaries in my lungs. This means, in my lungs some of my blood vessels where a capillary would connect an artery to a vein, are missing.

These malformations are called PAVMs (pulmonary arteriovenous malformation) and I inherrited them from my mother. She has these formations in addition to cerebral AVMs, which went undiagnosed until she was 47 years old. This lead to many strokes and siezures for her in a very short amount of time which have left her debilitated and bed ridden as well as reculsive and unresponsive.

My mother now lives in a rehabilitation center for neurological disorders and will never recover because of the amount of anti stroke medication she must take for the rest of her life. She has been in this condition now for about 8 years, after living at MGH and Spaulding for nearly 2 years while she under went many brain surgeries to control her CAVMs.

I share this terribly sad story to illustrate how fortunate and lucky I am.  Her illness made me a canidate for HHT at the age of 13 (at this time there was no way to diagnose it) and awareness is what will prevent me from experiencing what my mother went through.

I was diagnosed with PAVMs at the age of 18 (no CAVMs, and this means I will never have them because they're present at birth) and I now live my life in a monitoring stage. I get a CT scan every 5 years to measure the size of the malformations (at a certain size action must be taken, but hopefully I'll never need it!!!) and cope with a large handfull of secondary effects related to poor circulation, thin blood, low blood pressure, low O2 levels, and iron defficiency. I also take all measures and precautions against increasing my chances of a blod clot.

Now that you have the back story. .

My sister is diagnosed as well, but we have been unable to connect over the issue because of the strong emotional ties to our mother. Sounds like an oxy moron. I am still waiting for her to take the next step after diagnosis (into ID and monitoring), we were diagnosed together.

I am now 26 years old and I want to attend this conference to further my learning on the issue of HHT. I have exhausted my internet and medical rescources, and I need to make the next step which is to increase my understanding and learn about the new options and coping mechanisms that might be available for me or my sister.

 

The seminars I would like to attend would include:

Day 1:
s1: overcoming denial: becoming a family ambassador.
s2: bereavement: loss of your health, friend, family, loved one.
s3: psychological effects of HHT on partner relationships.

Day 2:
s1: managing anemia and iron replacement.
s2: health insurance & disability determination.
s3: blood thinners and alternative medicines (ADVANCED).

Day 3:
s1: planning for a family: issues and options.
s2: pregnancy and HHT
s3: skill building workshop: support groups/networking.

The conference itself costs $325, for which I will be applying for the scholarship. Travel & hotel expenses will be $5-600 depending when I can book.

 

 

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