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Frequently Asked Questions

This portion of our web site is to help you navigate through the medical evaluation process smoothly and safely. It is not intended as medical advice and questions concerning your medical plan should be discussed with your HHT physician. Dr. Clifford Weiss directs the Johns Hopkins HHT Center of Excellence.

HTT body diagram

About HHT

Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels and affects approximately 1 in 5,000 people. HHT is characterized by nosebleeds, telangiectasia, and arteriovenous malformations (AVMs), it affects males and females from all racial and ethnic backgrounds. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR) after the physicians who first described HHT over 100 years ago.

More than a century later, HHT remains a disease that is often misdiagnosed or misunderstood. Despite tremendous progress to raise the worldwide awareness of HHT, many patients and clinicians do not fully understand all of the disease manifestations.

HHT Frequently Asked Questions

  • Why do I need an evaluation for HHT at a Center of Excellence?

    HHT is a complex disease that frequently goes undiagnosed and untreated due to lack of knowledge. HHT can affect multiple organ systems and therefore having physicians available in one hospital system, who specialize in many areas of the body, is important for proper diagnosis and treatment.

    Johns Hopkins HHT Center of Excellence has a team of physicians who have the interest and expertise necessary for the diagnosis, treatment and monitoring of HHT.

  • How do I make an appointment at the HHT Center?

    Request an appointment by calling one of our medical concierges at 410-464-6555. They will complete an intake form that includes your demographic and insurance information.



  • How long will it take to get an appointment to see the doctor?

    Being evaluated for HHT is a process, which may involve multiple physicians and diagnostic tests. Physicians on our team have clinic appointments available on different days and times. We attempt to bundle your physician clinic appointments together with testing and prefer to minimize your time away from home if possible, however insurance authorization for clinic appointments and diagnostic tests may cause a delay in the process. Please call at least one month in advance to plan a visit for the following month.

    To avoid delays related to insurance coverage, we encourage you to determine if Johns Hopkins is in network with your insurance company and what your policy will cover.

    Diagnostic testing at Johns Hopkins cannot be scheduled unless pre-authorization is received from your insurance company.

    Clinic appointments can be scheduled but if your insurance has not authorized the appointment in advance, you will be asked for payment on the day of your visit.

    If you are in need of financial counseling services please call 410-955-4448.

  • What medical records do I need?
    Records should be requested from your primary care physician, otolaryngologist (ENT) and neurologist. Notes from your last history and physical that document a family history of HHT and current medical problems.
  • Can prior diagnostic testing be submitted for review?

    Yes, with exceptions.

    If your brain MRI was done with contrast less than five years ago, our neuroradiologist can review it. If the quality of the brain MRI is adequate to determine you have no brain AVMs then you will not need to have a repeat brain MRI with contrast.

    We request our HHT patients return every three to five years or sooner if worrisome symptoms develop. If your last chest CT with contrast was less than three years ago you may submit that for review.

    Once we receive electronic copies of your images, they will be submitted to the eRadiology Center and our HHT team physicians will review them. Your images will also be read by a physician in our radiology department. There are charges for processing and reading your images. You may submit this bill to your insurance company. For details about these costs, please call the eRadiology Center at 443-287-7378.

    If you transfer your HHT care to another facility or would like a copy of your images on CD, please call the e-Radiology Customer Service Center.

     

  • Can I have genetic testing at Johns Hopkins?
    Yes, call Genetic Counseling Intake number: 410-955-3071. Access FAQs here
  • How soon should my children be screened?
    Children of a parent diagnosed with HHT need screening as soon as possible. Our HHT team includes many pediatric specialists who will be consulted on an as needed basis. A pediatric pulmonologist with special interest and experience in HHT will perform initial screening for HHT and make referrals to other pediatric specialists on the team as needed.

    Our pediatric pulmonologist works closely with a team of Child Life Specialists who will help assess and support your child’s understanding of HHT and the screening process in an age-appropriate way that reduces anxiety and develops positive coping strategies.

    A Child Life Specialist will work with you to develop a plan for the screening process that will provide a positive experience for your child and family, as well as, excellent diagnostic information for the medical team. Your child’s initial understanding and comfort related to hospital visits and testing is extremely important to our team since monitoring and on-going medical care is necessary for parents and their children with HHT.

  • What if I have been diagnosed with HHT and am considering pregnancy?
    Prior to conceiving, a comprehensive HHT evaluation is recommended. Our HHT physicians are available for consult by your obstetrician and pediatrician as pregnancy, delivery and newborn baby care may need to be modified to meet the needs of a mother with HHT and her newborn baby.
  • What are the most reliable sources of information concerning HHT?

    Your HHT physicians and HHT Foundation International.

  • Where can I stay during my visit to Johns Hopkins?
    For assistance with accommodations, please call 1-410-464-6816 or email accommodations@jhmi.edu.
  • What should I do in case of an HHT related emergency?

    Physicians caring for you can call 410-955-5000 and page the Interventional Radiology Fellow on call (Dr. Clifford Weiss, HHT Center Director).

Additional Resources

  • Cure HHT: This organization focuses on funding research, educating families and physicians about HHT, providing linkages between people affected by HHT, collaborating with multidisciplinary HHT Treatment Centers worldwide, advocating and supporting those with HHT and engaging the scientific and medical community.  
  • Insurance and Billing
  • Guest Services at Johns Hopkins Hospital
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