VHL?

VHL?

By shannonMN
Posted June 28, 2008 at 10:30 am · 3 replies
In Getting a diagnosis

I am a 51 yr old white female with an angioma in my brain, 8 hemangioma on my liver. I also have primary aldosteronism, although so far they have not discovered any tumors on my adrenals. My creatinine and bun have been elevated, slowly going up this past year. My sister (2 yrs younger) has 2 menangiomas (sp?) in her brain, 8 hemangioma's on her liver and they just found a tiny tumor (not cyst) on her kidney. Both of our parents died young due to complications from brain tumors. Question, I am going in to see my dr. in a few weeks and wonder if I should push for testing for VHL? Also, what is type of Dr. specializes in VHL? Thanks in advance,

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By gale
Posted June 29, 2008 at 3:54 pm

I would probably communicate with the MN chaper. Send an email to us-mn@vhl.org and maybe exchange phone numbers.

Gale

By joyceg98
Posted July 16, 2008 at 10:24 am

We will be happy to send you some information about VHL to share with your doctors. Yes, it does sound like you should inquire about testing for VHL.

As Gale suggests, Sarah from our Minnesota chapter can help connect you with good resources for pursuing this.

Please send your request for materials to vhlpub@vhl.org, with your postal mailing address. Do not post them here (it's too public).

Best wishes,
Joyce

By joyceg98
Posted July 16, 2008 at 10:27 am

In response to your question "what kind of doctor specializes in VHL?" -- there is no one kind of doctor that knows VHL best. In each region we are in touch with doctors who have pursued knowledge of VHL more than others, and they are in multiple specialties.

VHL can cause tumors in the retina, brain, inner ears, spinal cord, kidney, pancreas, adrenal glands, and to a lessen extent in liver and lung. In that sentence alone we crossed nine medical specialties. And when it comes to genetic diagnosis, we need a geneticist.

Sarah can help you connect with a doctor in or near the hospital where you go for care who will be in the best position to help you determine whether VHL or some other genetic risk factor is increasing the odds of these tumors in your family.

All best wishes,
Joyce

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