HHT & Depression

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Tremendous progress has been made in recent years in understanding and treating the physical manifestations of HHT. These days, the disease is relatively simple to diagnosis and there are numerous options for addressing symptoms. Still, the stress of managing a disease every day can cause anxiety or depression. This is not entirely uncommon and does not make the affected person any weaker or less capable of living with HHT.

It’s important to understand both why this occurs and how you can help yourself or a family member who may be struggling.

  1. Remember: HHT does not cause any psychiatric disorder and is not associated with any higher incidence of psychiatric disorder. However, HHT can affect the brain, and some symptoms may affect mood, thinking, or behavior. Some of these symptoms may include: stroke or brain abscess, migraine headaches, severe anemia, and low blood oxygen levels.
  2. HHT can affect quality of life and consequently emotions. Some difficult emotional reactions to HHT include embarrassment, fear, grief, sadness, anger, confusion, helplessness, and guilt.
  3. Living with HHT can be stressful, and that stress can contribute to existing mental health issues such as depression and anxiety. There are a number of potentially stressful aspects of HHT such as diagnosis, discussion with family members, surgical or medical procedures, pregnancy, and family planning.
  4. The best may to control the stress of HHT is to manage the disease itself, which means limiting the negative effects of HHT. Management tactics include preventing medical complications, getting treatment when necessary, and adapting your lifestyle to be conducive to HHT.

New Brand Name and Identity

 

One mission drives everything that we do - to find a cure for HHT. This was our mission 23 years ago and today, Cure HHT renews that commitment to each and every person affected by HHT.  In addition, Cure HHT continues to be devoted to providing information and education for patients and physicians, improving access and standards of patient care, advancing treatments and raising awareness about HHT disease.

Our new Cure HHT brand - the result of a comprehensive rebranding - was officially revealed in July at the 17th National Patient & Family Conference. The rebranding process took over nine months and it helped us analyze all aspects of the organization. We learned that it is essential to change how we talk about ourselves, so that we can help those affected by HHT have the chance to live a normal life.

According to Marianne Clancy, Executive Director of the Foundation, “Our new logo and tag line - The Cornerstone of the HHT Community, not only honors the history and accomplishments of our organization, it symbolizes our commitment and place with the HHT community.  It serves as the foundation upon which to expand our efforts and reach more people.”

Cure HHT is: 

  • The “trusted” source for people and families affected by HHT to find the latest information, resources to manage their disease and live a full and healthy life.
  • Leading the way to deliver better treatments and care by connecting together the medical and scientific communities in lasting partnerships.
  • The rally cry of the community, empowering and inspiring people to take action and spread the word and raise awareness about HHT disease.

Cure HHT’s efforts today are funding the best HHT researcheducating patients and improving access to qualified HHT physicians. Our goal is to transform treatments and perceptions about HHT disease worldwide. Treatments and research on HHT have not kept pace with other diseases. Cystic Fibrosis and ALS, both as common as HHT, take less time to diagnose. People suffering from HHT can wait up to 30 years to receive a diagnosis. “There is an urgent need for new therapies for HHT and for the research to get us there," said Dr. Marie Faughnan, Scientific Research Director for Cure HHT. “People with HHT see this need in their families, Cure HHT joins them to the broader community where they can reach out for help.”

We believe a cure for HHT disease is possible within our lifetime. Join us in the fight!

Cure HHT unveiled