Kathleen and Dr. Chris Adelman walk miles inside the Clinical Center daily when they are at the NIH for appointments or hospitalizations. They try to clock 10 to 16K steps a day. On a recent tour of the floors, they saw the Friends at NIH banners, and stopped in to ask how they can help.
Kathleen credits her NIH doctors with saving her life many times over. She looks the picture of health, and exudes an optimistic view on life, but she has a rare genetic disease that’s brought her frequently to the NIH Clinical Center from Cleveland, OH for more than 30 years.
Leslie, 32, their daughter, also shares the genetic disease, VHL, Von Himmel-Landau. VHL is a rare disease that causes tumors and cysts to grow in various parts of the body including the brain, spinal cord, kidneys, pancreas, and adrenal glands. The tumors are usually benign, but some can become cancerous generally when larger than 3 cm. The goal is to eliminate the tumors before they grow.
Kathleen was first diagnosed with VHL during the pregnancy of Leslie, her second child, when doctors discovered she had a brain tumor. Her sister and mother both died of the disease, but as pioneers, Kathleen says their blood helped determine the genetic mutation that causes the disease.
Leslie calls the NIH her “home away from home.” After having multiple tumors removed, she says VHL, the term, holds a special meaning for her — “very happy life.”
At this visit, daughter Leslie was the patient. She had surgery the previous day for tumors on her adrenal glands. The tumors had
interfered with the release of adrenaline in her body causing high blood pressure and her heart to race continuously. “The tumors lit up on the scan like the 4th of July,” says Leslie. “I’m so glad to feel more normal now that they are removed.”
Leslie’s blood tests showed she had the genetic mutation for the disease before she had symptoms. She was monitored closely at the NIH, but wasn’t until eight years ago that the first tumors were found. A third-year nursing student, Leslie says she’s a happy NIH “frequent flier.”
The Adelmans want to support patients who need housing near the NIH during treatment, transportation to Clinical Center or other services that Friends’ provides. They value the specialized patient-centered care and research at the NIH that has saved Kathleen and Leslie’s lives. To support Friends at NIH through our Grateful Patient and Family Program, please contact us or go to our website.
You can choose to honor a doctor or nurse with your support. Please be assured that the Grateful Patient and Family Program is voluntary and confidential. Friends’ works with you to honor your wishes.
As a 501c3 nonprofit, located in the NIH Clinical Center, Friends of Patient at the NIH receives no government funding.