Newly Diagnosed

Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is a genetic blood vessel disorder that affects about 1 in 5,000 people worldwide. HHT does not discriminate… it impacts males and females, regardless of age, from all racial and ethnic groups.

You have been affected by HHT in some way. Any medical diagnosis can be scary but the HHT Foundation, along with our partnering medical institutions known as HHT Treatment Centers of Excellence, are here to relieve your anxiety. You are one of the lucky ones…. It is believed that 90% of those who have HHT don’t know that they have the disease. These people are at great risk of experiencing a catastrophic event. You, however, have been diagnosed and there are physicians specializing in HHT that are waiting to take care of you and other members of your family affected by this disease.

Understanding your family health history is necessary to determine the lineage of the disease, which family members could also be impacted, and the manifestations of the disease in your family. Create your own Family Health Portrait and share it with your physician as well as your extended family.

 

SO I HAVE HHT - WHAT SHOULD I DO?

STEP 1: Use the Cure HHT Website (www.curehht.org) for basic information and guidance.

  1. Read "Learn About HHT" brochure at a minimum to educate yourself about issues relating to HHT diagnosis, screening, and treatment. Be sure to note why a person suspected of having HHT should have antibiotics before dental work, and how simple screening for the internal manifestations of HHT, especially in lung and brain, can prevent disability or even death. HHT is a disorder you can do something about! This truly is an instance where knowledge is power.
  2. Print off information specifically provided for your local physician and other health care providers (Resource tab) so you can begin to educate your doctors as well as yourself.  "HHT Facts at a Glance"  and the "HHT Clinical Guidelines" are great articles with which to start.

STEP 2: Stand with us! Become a member of Cure HHT to:

  1. Receive newsletters chock-full of up-to-date information on HHT.
  2. Obtain scientific updates with the latest expert recommendations.
  3. Begin to educate your family members about HHT; you may even want to give some gift memberships to those you suspect are affected.
  4. Stand with others who are living with HHT to advocate for patients, educate healthcare providers and the public, fight for federal funding to support HHT research, and make scientific breakthroughs possible.

STEP 3: Contact an HHT Treatment Center

  1. HHT Treatment Centers possess a multidisciplinary team of experts who together can treat the many facets of HHT, including nosebleeds and brain or lung involvement. Unlike local physicians, who may have no knowledge, or at best be familiar with only one aspect of this multi-system disorder, these medical professionals look at the big picture and take an integrative approach when it comes to HHT.
  2. There is an international community of HHT Treatment Centers, sharing knowledge and information. Many of the physicians, geneticists and others on the Center teams speak at international conferences and publish articles about HHT. These are the people that know HHT.
  3. Click on the "Manage HHT" tab to find the closest HHT Treatment Center.

STEP 4: Continue Your HHT Education and Get Involved!

  1. Do more in depth reading on the website and in the newsletter as you continue to educate yourself; perhaps you will even become your family's HHT advocate.
  2. Attend an HHT Patient and Family Conference to learn about every facet of HHT from medical experts. Foundation members receive a registration discount!
  3. Get involved! There are many ways to support the Foundation's mission, from donating to volunteering, from fundraising to serving on the Board of Directors. You can make a difference.

 

This is a treatable disorder, and many of its more dangerous aspects are preventable. Take one step at a time and remember that we are here for you.