The headaches were excruciating. Her blood pressure skyrocketed dangerously high. There were days when she was confined to bed. At the time, Ashleigh Botha was just 11 years old.
Doctors in her native South Africa diagnosed Ashleigh with fibromuscular dysplasia, or FMD. This under-diagnosed vascular disease causes arteries to have abnormal cell growth, leading to a narrowing of the blood vessels. Ashleigh was the first patient with FMD her South African physicians had treated.
Ashleigh’s form of the disease turned out to be highly aggressive. The restricted blood flow caused her kidneys not to function normally. Because of her condition, she cannot take certain pain medications. The daily pain left Ashleigh, now 16 years old, unable to attend school regularly.
She underwent three angioplasty and/or stent procedures in South Africa to try and keep her renal arteries open, to no avail.
“South African doctors do not have the experience or knowledge to treat this disease and if it is not managed correctly, there can be major complications,” says her mother, Colleen. “Ashleigh's doctors told us to take her to America for treatment.”
It was then that Ashleigh connected with Kari Ulrich, a registered nurse in Minnesota who also has FMD, through the social networking website Facebook. With Kari’s help, Ashleigh was soon connected with Heather Gornik, MD, a vascular medicine specialist at Cleveland Clinic. Dr. Gornik reviewed Ashleigh’s records and communicated with her mom via email and determined that the team at Cleveland Clinic’s FMD Clinic could help.
Once in Cleveland, Ashleigh underwent a thorough evaluation by Dr. Gornik, along with Cleveland Clinic nephrologist James Simon, MD, and rheumatologist Carol Langford, MD. Ashleigh’s diagnosis of renal FMD was confirmed. She subsequently underwent a detailed study of the renal arteries by Christopher Bajzer, MD, Director of Vascular Intervention in Cleveland Clinic’s Department of Cardiovascular Medicine. Angiograms were taken of the aorta, both renal arteries, and the arteries that supply blood flow to the intestines. A specialized intravascular ultrasound of the renal arteries also was performed. Dr. Bajzer found that the stent in her right kidney was crushed and severely narrowed.
“The team conferred and decided surgery would give her the most durable result,” explains Dr. Gornik. So in July 2009, Ashleigh underwent renal bypass surgery with Vascular Surgery Chairman Daniel Clair, MD.
While the procedure will not cure Ashleigh, the procedure will help restore blood flow to her kidneys and give the aspiring model a chance to get back to leading an active life. She was recovering well and able to return back home to Port Elizabeth, South Africa in early August.
“Ashleigh’s been through a lot. She’s been very brave,” her mother says. “While it’s been a difficult journey, Dr. Gornik and the whole team have been absolutely the best – the lifeline to everything.”
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