First Steps

SO I HAVE HHT - WHAT SHOULD I DO?

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

1. Read "HHT Overview " and "Facts at a Glance " 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 so you can begin to educate your doctors as well as yourself. "Medical Summary " and "Diagnostic Criteria " are great articles with which to start.

STEP 2: Stand with us! Become a member of the HHT Foundation 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 here to find the list of HHT Centers with addresses and contact information.

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. One step at a time�and remember that we are here for you.