Hereditary Hemorrhagic Telangiectasia Program

Our experts have extensive experience treating children and families with the genetic condition hereditary hemorrhagic telangiectasia (HHT).

The Hereditary Hemorrhagic Telangiectasia Program at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, offers state-of-the-art, individualized care for children and families with hereditary hemorrhagic telangiectasia (HHT).

HHT is a genetic disorder that causes enlargements and tangles of arteries and veins, which can cause excess bleeding. It can occur in the brain, lungs, digestive system, nose, skin or other organs.

Why Choose Johns Hopkins All Children’s

HHT can be difficult to diagnose. Patients may present with signs and symptoms such as:

  • Nosebleeds
  • Telangiectasia (smaller abnormal artery to vein blood vessels) on the skin on the hands, mouth or nose.
  • Arteriovenous malformation (or AVMs, which are abnormal connections between arteries and veins) in the brain, lungs, liver; gastrointestinal bleeding from these tiny abnormal artery to vein connections
  • History of stroke, bleeding, or abscess (infection) of the brain

These symptoms may be less apparent in younger children and increase as the child gets older. That is why it is important to receive comprehensive care from a team that has experience working with families with HHT.

Led by interventional radiologist Sally Mitchell, M.D., an expert in HHT, and expert hematologist Irmel Ayala, M.D., our multidisciplinary team of physicians and nurses has extensive experience in diagnosing and treating HHT and can provide treatment to your child as well as other family members (children or adults) who may also have this genetic condition.

The Johns Hopkins All Children’s HHT team includes:

  • Pediatric and General Interventional Radiology
  • Hematology-oncology
  • Echocardiology
  • Gastroenterology
  • Genetics
  • Fetal Care
  • Neonatology
  • Epileptology
  • Neurosurgery
  • Neurology
  • OB-GYN
  • ENT
  • Anatomic pathology
  • Psychology
  • Pediatric Surgery
  • Plastic surgery
  • Pulmonology
  • Critical care medicine
  • Nurse practitioners

Meet Our Team

Together we make sure that your child is diagnosed correctly and has access to all the medical and surgical treatment options he or she might need and develop an individualized plan of care to address your child’s condition.

The patient and their family are encouraged to come to the patient’s first visit. We’ll examine your child’s condition and review with you whether other family members may have HHT — since it is a genetic condition, often several members of the family may have it.

We may recommend further testing to evaluate your child’s condition. Depending on the symptoms experienced by your child and other members of your family with HHT, this may include CT scan of the chest, MRI of the brain, or genetic testing. 

Before your appointment

We accept referrals from your child’s physician or self-referrals.

Before the first appointment, we may need medical records including hard copies of your imaging studies, radiology reports, genetic information and lab tests. Medical records may be mailed to:

Hereditary Hemorrhagic Telangiectasia (HHT) Program
Department of Radiology
Johns Hopkins All Children’s Hospital
501 Sixth Ave. S.
St Petersburg, FL 33701

Records may also be faxed to: 727-767-3596

Please be sure to contact your insurance company to verify your benefits and referral requirements.

Arriving at your appointment

When you arrive at Johns Hopkins All Children’s Hospital, enter the Outpatient Care Center (OCC) from the second floor of the parking garage. Take the elevator to the third floor and walk behind the elevators into the clinic waiting room. Check in for your appointment at the General Surgery/Plastic Surgery window.

Contact Us

For more information about the Hereditary Hemorrhagic Telangiectasia (HHT) Program, please give us a call at the phone number below. We serve families in the greater Tampa Bay area and beyond.