Explanation of HHT and the Troubles Caused Throughout the Body
A simple, visual explanation of HHT and how the disease can impact the body. You can use this resource to educate yourself, family members, school nurses and te…
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Health Benefits of Geranium Essential Oil
The Essential Oil of Geranium has a lot to offer HHT patients. Geranium Oil can stop bleeding in two ways: it causes blood vessels to contract and helps stop bl…
MorePulsed Dye Laser Treatment
Dermatology is a specialty not commonly represented in the HHT medical community but many HHT patients experience symptoms relating to their skin. This handout…
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Learn About HHT Genetic Testing
Genetic testing is a critical component of your HHT journey and family history. Get answers to the most commonly asked genetic testing questions. Specifically,…
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PH and HHT Physician Brochure
PH can develop in HHT as a consequence of a high cardiac-output (HO) state. As a physician it is important that you understand the relationship between these tw…
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Screening for Pulmonary AVMs
This handout provides HHT patients and physicians a step-by-step guide to the pulmonary (lung) arteriovenous malformation (PAVM) screening process using Contras…
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Hazardous Natural Health Products in HHT
HHT patients can bleed easily, which is why products that may thin your blood or reduce your ability to clot can be very dangerous. This handout was developed b…
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FDA Food and Drug Interactions
What you eat and drink can affect the way your medicines work. Use this guide to alert you to possible “food-drug interactions” and to help you learn what you c…
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Iron Preparation Charts
This table of iron products, dosages and general comments was developed by Dr. Raj Kasthuri, Hematologist and Director of the UNC Chapel Hill HHT Center to be a…
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Pumping Iron in HHT
This handout by Ronalee Robert, Registered Dietician at the St. Michael’s Hospital HHT Center in Toronto, Canada was developed for the Patient & Family Conf…
MoreLow Iron Levels and Blood Clots in HHT
You probably know that people with HHT are often short of iron because of bleeding, particularly from the nose. Being short of iron is what makes you anemic. Bu…
MoreIron Deficiency in HHT
Iron deficiency is common among HHT patients and is primarily a consequence of bleeding from telangiectasias in the lining of the nose and intestinal tract. Iro…
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Prophylactic Antibiotics
HHT, Antibiotics, Dental Work – How to determine if you need prophylactic antibiotics before any “dirty” procedure. With HHT, the concern is that bacteria can g…
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Glossary of HHT Terms
Your Guide to HHT Medical Terminology. HHT impacts multiple organs and is defined by a variety of medical terms. To advocate for your healthcare you need to und…
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Epistaxis Severity Score
The ESS was developed through a Cure HHT research grant. This online tool is to calculate the severity score of nosebleeds. Want to know if your nosebleed treat…
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A Guide to Genetics and Health
Genetic Alliance created this customizable Guide to Genetics and Health for you to share with your family or community. This simple guide covers topics such as,…
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Epistaxis Journal
Track your nosebleeds with this journal developed by an ENT specializing in HHT. It is important to give your doctor an accurate picture of your nosebleed histo…
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Difference Between Social Security Income (SSI) and Social Security Disability Insurance (SSDI)
Are you disabled? Learn the difference between two federal government assistance programs, Supplemental Security Income (SSI) and Social Security Disability Ins…
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How to Appeal Health Insurance Denial
Simple instructions to follow if your health insurance claim has been denied.
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State Insurance Regulator Roster (2014)
Contact your local insurance regulator if your insurance company isn’t treating you fairly. The State Insurance Regulator offices enforce laws and regulations f…
MoreAnatomy Gift Registry Donor Services Brochure
Tissue or whole body donation allows advancements in research that aren’t possible using animal or artificial models. The mission of Anatomy Gift Registry’s (AG…
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#OnMyOwn (recorded)
Dr. James Gossage, Director of the Pulmonary Vascular Disease Program and HHT Center of Excellence at Augusta University, and Dr. Sara Palmer, psychologist and…
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HHT: Caring for the Younger Generation (recorded)
Lynne Sekarski, MSN, RN, CPN, nurse coordinator for the St. Louis Children’s Hospital HHT Center of Excellence at Washington University, provides an in-depth co…
MorePrevalence and predictors of anemia in HHT
American Journal of Hematology. Authors: Kasthuri, RS, Montifar, M., Nelson, J., Kim, H., Lawton, MT, Faughnan, ME, and the Brain Vascular Malformation Consorti…
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Ask the Doctor
Dr. James Gossage, Director of the Pulmonary Vascular Disease program and the HHT Center of Excellence at Augusta University, answers questions about HHT screen…
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Depression and Post-Traumatic Stress Disorder in Individuals with HHT
Thrombosis Research. Authors: Shruti Chaturvedi, Marianne Clancy, Nicole Schaefer, Olalekan Oluwole, and Keith R. McCrae. This article is available for public u…
MoreAsymptomatic Pulmonary Arteriovenous Malformations in Children with HHT
Pediatric Pulmonology. Authors: Ashley M. Gefen and Andrew J. White. This article can be purchased directly from the publisher. Click to view the article descri…
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What’s the Skinny on HHT? (recorded)
Dr. Richard Antaya, Professor of Dermatology and Pediatrics and Director of Pediatric Dermatology at Yale University HHT Center of Excellence, explores what’s h…
More20-year Follow-Up Study of Danish HHT Patients – Survival and Causes of Death
Orphanet Journal of Rare Diseases. Authors: Anette Kjeldsen, Katrine Saldern Aagaard, Pernille Mathiesen Tørring, Sören Möller and Anders Green. This article is…
MoreEffect of Topical Intranasal Therapy on Epistaxis Frequency in Patients with HHT. A Randomized Clinical Trial.
JAMA. Authors: Kevin J. Whitehead, MD, Nathan B. Sautter, MD and Justin P. McWilliams, MD. This article is available for public use and does not require purchas…
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