March Webinar Announced: Psychological and Social Aspects of Living with HHT

Dr. Sara PalmerOn March 18 at 5:30 Eastern, join Dr. Sara Palmer examines the effects of HHT on emotions, family, and social life. She offers strategies for managing the everyday stress of living with HHT, recognizing when professional treatment is needed and strengthening family supports. Special tips for family caregivers and parents of children with HHT will be included. There will be adequate time after the presentation for questions and discussion.

Sara Palmer, PhD is a rehabilitation psychologist and part-time assistant professor in the Johns Hopkins University Department of Physical Medicine and Rehabilitation. Dr. Palmer provided clinicalservices for people with disabilities and chronic illnesses and their families for over 20 years. She has authored articles and chapters in professional journals and text books, as well as books, articles and webinars for consumers on adjustment to disability, spinal cord injury, caregiving, stroke, and parenting children who have a physical disability. Dr. Palmer is a frequent speaker for student, professional and consumer health groups, and a volunteer for local disability organizations.

Dr. Palmer is the coordinator for the Maryland HHT Regional Network Alliance. She was diagnosed with HHT in her early 30’s. She has two adult children, one of whom has HHT.

Watch the webinar recording here.

February Webinar Recording Available

Dr. Raj Kasthuri presented a webinar on Iron Deficiency and Anemia in HHT. In the webinar recording, Dr. Kasthuri discussed the manifestations of iron deficiency and anemia, how the diagnosis of iron deficiency is made and the different approaches to treat iron deficiency anemia including oral and intravenous iron replacement strategies.

Iron Deficiency and Anemia in HHT Disease

Presented by: Dr. Raj Kasthuri
Dr. Raj Kasthuri discusses the manifestations of iron deficiency and anemia in HHT patients.

National Health Council Announces New Insurance Calculator

National Health Council Patients First LogoNavigating the maze of health insurance can be a daunting task, especially for those with HHT disease. Luckily, the National Health Council (NHC) has just announced the launch of two exciting new tools on their website that provides resources to help individuals make informed decisions about purchasing health insurance on the marketplace.
Using the Estimate My Cost site, individuals can project how much to expect in annual anticipated medical services and how drug usage will impact their health care costs across the plans offered in their state. The other tool – Explore My Options – allows people to review a set of six different health scenarios to see how different health conditions, medical and drug use, and mental plans impact out-of-pocket costs.
Combined, these two unique tools will provide people with chronic conditions, like HHT disease, a more comprehensive picture of their health insurance options.
The NHC will continue to collect patient stories on the Share My Story section of the website to guide recommendations for improvements to the marketplace and add web-based resources created by NHC member organizations to the Answer My Questions section.
We encourage you to check out these sites to help make more informed decisions about your healthcare options and to give any feedback on your experience to the National Health Council.