VHL Family Alliance Support Community

The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

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How do you handle people's prejudices?

By joyceg98 · Posted yesterday at 3:46 pm
Discussion in Finding emotional support · 0 replies
One of our members has asked me to post this question for him anonymously. I'll call him Zack: How do you handle situations where people treat you differently because of your disease, especially any obvious ...

Did stress exacerbate VHL symptoms for you?

By ClaraJ · New reply yesterday at 3:43 pm
Discussion in Health management issues · 5 replies
I am wondering if others first learned of a VHL diagnosis following a very stressful time in their lives? I was bullied in the workplace and thought my digestive issues were stress related. About a year ...

Tumor in the L9 and L10 Vertebrae

By naviv101 · New reply May 15, 2012
Discussion in Health management issues · 4 replies
My Mother is surviving stage 4 colon cancer. Her doctor never diagnosed her even though she had regular colon exams. Her attorneys found images where her doctor of 20 years dropped polyps in her intestines ...

post menopause fibroids

By dac194980 · New reply May 11, 2012
Discussion in Getting a diagnosis · 2 replies
Hi I am 58 post menopause, just diagnosed with a new 5cm uterine fibroid, last years ultrasound showed no fibroids. Has anyone had a new one after menopause? I am concerned about leiomyomasarcom. any ...

cancer

By ireland22 · New reply May 10, 2012
Discussion in Finding a doctor · 4 replies
Hi All my friend who is only 35 has neuroenderine pancretic cancer and cancer of the liver just wanted to know if anyone has any good hospitals in the usa as we are from Ireland that can help ? thanks ...

Mom's Day Run

By Hi_its_suellen · New reply May 10, 2012
Discussion in Fundraising and raising awareness · 10 replies
Please join us for the 2nd Annual Mom's Day Run 2012, to raise money and awareness for VHL (von Hippel-Lindau) and LLS (the Leukemia & Lymphoma Society). Mom's Day Run 2012 - 5K/10K May 13, 2012, 8am ...

My life with VHL

By pmedi1 · New reply May 10, 2012
Journal · 18 replies
I am 60 yrs old and was diagnosed with VHL in 2008. It started with trying to get a full knee replacement. I needed to get clearance for that surgery so I needed to get a full exam from my primary Dr ...

Swelling of the spinal cord

By zaviebaby · New reply May 10, 2012
Journal · 1 reply
My brother has a great deal of swelling on his spinal cord due to several surgeries over the past two years. Warren, my brother, had hemangiosblastomas that were symptomatic and had to be removed but ...

new to vhl

By deja1aki · New reply May 9, 2012
Discussion in Finding emotional support · 15 replies
Our son was found to have Bilateral Pheochromocytoma back in October 2010 at the age of 13 he has since undertaken the removal of complete left adrenal and 3/4 of the right adrenal glands inwhich we thought ...

Meeting survey - Tennessee and surrounding states

By joyceg98 · Posted May 6, 2012
Journal · 0 replies
The recent VHL meeting in Nashville was great! WE MISSED YOU! http://www.surveymonkey.com/s/K6R2GYP Would you please fill out this brief survey to help us plan the next meeting? Tennessee is a long state ...

What age to tell the children?

By homeawayhome · New reply May 3, 2012
Discussion in Parenting issues · 2 replies
Several family members keep asking me when I am going to tell my daughters that they have VHL. They are only five and seven years old. Right now, I tell them that the tests/scans/MRI are just medical ...

VHL - eye problems

By elena_c · New reply April 29, 2012
Discussion in Finding emotional support · 5 replies
Hy everyoane, my name is Elena and I'm from Romania. I'm 30 yrs and 6 yrs ago i was diagnosed with VHL. My problem is in my eyes. I hav hemangioblastomas in both eyes, but thanks God the at left one there ...

Pancreatic Cysts

By topseena · New reply April 29, 2012
Discussion in How my diagnosis changed my life · 5 replies
I wrote last year in August, regarding a Cyst found in the head of my pancreas, and the surgeon at that time, was all doom and gloom, wanting to remove my pancreas and my ending up with Diabetes and insulin ...

Kidney Transplant

By lisa71 · New reply April 28, 2012
Discussion in Finding emotional support · 5 replies
I have been on dialasis for almost four years , I lost both kidney and am now waiting on a transplant. My brother wants to be a donar and is going through work up.I am a little worried about the antirejection ...

Brain Surgery Successful

By diane65 · New reply April 27, 2012
Discussion in Health management issues · 3 replies
Thanks everyone for your prayers. I had surgery on April 19 and was discharged on April 22. I was up an about the next day. My balance was back after months. All other symptoms are also gone. I walked ...

Pancreatic insufficiency

By joyceg98 · New reply April 23, 2012
Journal · 2 replies
Today at 3 pm Eastern US time I will be interviewing Tina Gruner, a registered dietitian and certified diabetes educator, about how best to manage pancreatic insufficiency. The pancreas normally secretes ...

How to approach genetic testing for VHL

By Teesa2you · New reply April 16, 2012
Discussion in Getting a diagnosis · 3 replies
Hi all. I have a history of Pheochromocytoma. Surgically removed L adrenal. I went to get my labs done and my plasma catecholamines are very very high. I had a CT scan done, but the radiologist who did ...

The Inspire Q&A: Inspire talks with Howard Luks, MD

By John2 · New reply April 15, 2012
Journal · 59 replies
Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

3 mri's and no answer

By DMCT · New reply April 13, 2012
Discussion in Getting a diagnosis · 4 replies
My name is Diane, and I have had 3 MRI's, and I'm afraid. I'm getting weaker in my hands and balance is getting worse. My nero surgeon can't seem to pinpoint if it's from my spine or brain. What should ...

No Patience

By Christine29 · New reply April 11, 2012
Discussion in How my diagnosis changed my life · 30 replies
Lately, it seems like I have NO patience for things, and people. I used to be so laid back, and now I seem to get so annoyed/mad/frusterated so quickly and easily. Every morning I tell myself that I'm ...

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The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the VHL Family Alliance, an Inspire trusted partner.