Once Upon a Time

Once upon a time there was a little girl who loved to spend time with her Dad. When they were together, her Dad would have terrible nosebleeds and the little girl felt very sad for her Dad. As the girl grew up and had children of her own, she started to have nosebleeds just like her Dad. She didn’t want her life to be restricted by nosebleeds so she started to visit doctors. No one could provide a reason why she had nosebleeds.

 Scared because she couldn’t get the help she needed, she lost her spontaneity and confidence with others because she was always anticipating that her nose would bleed. She began to search the internet and found the HHT Foundation. She called and got the help she needed from physicians who understood HHT disease. A thorough screening identified a fistula in her brain and liver AVMs. The HHT gene was identified in both of her children. 

Today, she and her family are under the care of HHT physicians at HHT treatment centers. Her fear has been replaced by knowledge and frustration by hope. She is grateful to the Foundation and outstanding physicians who have restored her faith and hope in finding a cure.

— Deb Drysdale, HHT Foundation Board Member

As we wrap up HHT Awareness Month, Deb’s story demonstrates the impact HHT can have on an entire family, for generations, following each family member throughout the course of their life.  Her story demonstrates not just the physical impact of living with HHT disease, but the psychological impact as well. Lack of a diagnosis only compounds the fear, frustration, insecurity and embarrassment experienced by sufferers of HHT. All of these common emotions could be alleviated with an answer. Generations can live a better life if we find a cure. 

HHT Awareness Month may end this week, but our mission is far from over. Help us spread the message of HHT Awareness not only over these last few days of June, but throughout the year as well. Awareness is change and we will only make a difference if our voices stay strong until that change comes. Continue to follow HHT Foundation on Facebook and Twitter and share our messages with your social network throughout the year.

Together, we will find a cure for HHT and soon, we can say “Once upon a time, it took 30 years to be diagnosed with HHT.”

The Significance of “I Do”

How many of us really know the depth and significance of the words I Do

I was not diagnosed with HHT until after I was married in 2005.  At which point, I asked my wife if shed like a divorce allowing her to escape this arduous journey that I was embarking upon.  Thankfully she declined and has been a gift from God ever since - providing both love and emotional balance.  

From my date of diagnosis in 2006 until December 19, 2011, there was very little change in my daily routine.  Until my nosebleeds exponentially changed, causing four trips to the ER, every moment was filled with fear of a major nosebleed and I soon became well aware of the effects of our bodys adrenaline. This dramatic change caused us to reevaluate our lives, priorities and treatment options. 

We moved to Washington, D.C. to be closer to an HHT Center of Excellence and hopefully a doctor would continue Dr. Davidsons work with Avastin.  This seemingly easy task was far from that and it wasnt until we met Dr. Gossage and Dr. Whitehouse that life seemed to shed a little sunshine our way.  After my initial consult, Ive had two Laser & Avastin surgeries in two years with Dr. Whitehouse. This last surgery has yielded relatively no nosebleeds for eight months.  

I would like to thank the entire HHT Foundation and its Board of Directors, the selfless doctors and staff at each of the HHT Centers of Excellence, and finally and perhaps most importantly the courageous individuals who live with HHT.

- John Lane, HHT Foundation Member

Imagine reevaluating your entire life - where you live, the impact of your illness on your spouse and loved ones, wondering what the future holds - all due to a disease that still eludes many doctors. Imagine the fear and worry that would surround you if you didn't know how to control your nosebleeds -- when the next one was coming, what was causing it and if it could be controlled.

John moved to Washington DC to receive better treatment. What if you couldn't move to a new city? What if you didn't  have access to quality healthcare?

Please help us spread the word to raise awareness and research funds for HHT so that each of the estimated 1 in 5000 Americans with HHT disease have access to a proper diagnosis and treatment.

Do you have a wedding anniversary during the month of June? Please consider raising funds for and knowledge of HHT during Awareness Month. Easily set up a fundraising page, tell your story and let your friends and family know how they can help.

No one should have to leave an entire life behind to find the help they need.

Everyday, Someone Had a Nosebleed

When I was younger, I lived in a house where four out of five people had HHT disease. 

Everyday, someone had a nosebleed. My mother and grandmother were often rushed by ambulance to the hospital for transfusions because they couldnt stop the bleeding. My brother underwent an arduous operation because he had nearly fatal AVMs wrapped around his spinal column and he had nosebleeds every day as an adult. I had copious nosebleeds between the ages of 19-22.

Now my daughter and her daughter have HHT and as I was nearing 60, I was asked to join the board of the HHT Foundation. 

As a board member, I became aware of the many perils of this disorder and I started a fundraising campaign targeting individuals and the government with the purpose of raising awareness and to effect research with the hope of finding a cure for HHT. 

– Jane Silk, HHT Foundation Board Member

As Jane’s story demonstrates, HHT impacts you, your family and your daily life.

Being a teenager is difficult enough. While you’re dealing with the effects of HHT on your body, to your relationships and in so many other areas of your life, the symptoms of HHT only add to the stress of becoming an adult.

Unexpected nosebleeds are embarrassing. Even if you’re lucky enough to have received an HHT diagnosis (90% of those with HHT are not), dealing with the effects of spontaneous nosebleeds and explaining why they are happening is difficult at any age.

The HHT Foundation is here to help.  

We encourage you to increase the distribute our research materials or join one of our support groups. And while support for those who suffer from HHT is a key part of what we do, we’ll have an even greater impact if we can raise awareness for the disease and finally find a cure. Help us spread the word and stop the nosebleeds for good. If you set up a fundraising page this month and raise more than $50, you'll receive a limited edition HHT Awareness t-shirt and five Cure HHT wristbands. Get the details here.

Who Has 30 Years to Wait for a Diagnosis?

As part of HHT Awareness Month, we’ll be sharing stories from people whose lives have been impacted by HHT.

This week we focus on children with HHT. If a parent has HHT, each of their children has a 50% chance of having the disease. With symptoms often as vague as a nosebleed and a lack of research and awareness surrounding HHT disease, it can sometimes take up to 30 years to receive a proper diagnosis. 30 years is too long to wait, especially for a child.

David’s family was fortunate to receive a diagnosis before the disease presented itself with catastrophic consequences. Read his story and help us spread the word to raise HHT awareness and find a cure. Make sure to visit our HHT Awareness Month website, CureHHT.org.

In December 2011, our daughter was diagnosed with HHT. She was only ten at the time.  The same diagnosis quickly followed for my wife and our twelve year old son. 

 Our previously very healthy family was no longer so  I quickly learned about and then got involved with an organization called the HHT Foundation.  I learned how this small group of dedicated and passionate people accomplished amazing things by leveraging every single dollar received to its fullest extent.  They establish centers for comprehensive patient care,  fund research to understand the genesis of the disease and organize conferences for patients and families to learn, share and offer support.  Many thousands of people remain misdiagnosed or undiagnosed; our research efforts, while truly promising, are way too limited to effect necessary change, and parents continue to pass this disorder to their children, with sometimes devastating consequences.

I want what all parents want – for our kids to have healthy, long lives filled with spontaneity and life.”

—David Rinn, HHT Foundation Board Member

 Share your story

June is HHT Awareness Month

The HHT Community is the Catalyst for Finding a Cure for HHT Disease.

The National Institute of Health (NIH) currently spends half-a-million dollars on research for HHT disease. The NIH spends $75 million EACH on diseases with similar incidents. The lack of HHT awareness even among the medical community means that it can take on average 30 years to receive a correct diagnosisWho has 30 years to wait?

When you’re suffering from regular nosebleeds and are at risk for blood clots, no one should have to live in fear, especially for 30 years. Together our actions help raise awareness about HHT and raise funds to reduce the diagnosis time so that no one has to live with fear and worry. Our goal is to improve the lives for those suffering from this genetic disease, one that impacts an entire family for generations. Which is very important to spread the word and raise awareness about HHT disease. 30 years is too long to wait. 

In honor of HHT Awareness Month, the Foundation is counting down the month of June to reveal some exciting changes. There are endless ways that you can take action and spread the word to raise awareness during June. Visit CureHHT.org, for ideas, events and more!

A few ways to get started: