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

Join today

All new and active discussions & journals

Living with an incurable disease!

By yankeesteve · New reply yesterday at 2:54 pm
Journal · 4 replies
My name is Stephen Cicerchia, My wife and I have three beautiful children .I don't believe anyone knows the pain that we all suffer from crohns,unless they experience it themselves.I have done Remicade ...

At NIH

By littlesis64 · New reply yesterday at 11:12 am
Journal · 1 reply
I am exhausted today, ugg! I had my MRI and CAT scan yesterday I dont know about anyone else but I get such a sore throat and horse even with my premeds after the CAT scan and everything I eat makes me ...

Support your group and raise awareness with badges

By Walter · New reply March 8, 2010
Journal · 43 replies
Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

vagus nerve/ paraesaphegeal hiatal hernia

By katinhat · Posted March 8, 2010
Journal · 0 replies
I just got out of hospital Fri after a week of horrible adominal pain, distended tummy.. and in the emergeny room before they admitted me, I threw up alot of blood, freaked me out.. anyway after a week ...

NIH

By littlesis64 · New reply March 8, 2010
Journal · 3 replies
Leaving for NIH this Sunday, not looking forward to the testing but it has to be done. Talk to you when I get back and will let you know how things went ...

Pheo testing

By marie3 · New reply March 7, 2010
Discussion in Parenting issues · 20 replies
I just have a quick question regarding pheo testing. Every year I have my son's plasma free mets test done. Every year it's a hassle making sure it's done correctly. Does anyone know what color the test ...

VHL

By ireland22 · New reply March 6, 2010
Discussion in Kids and teens · 3 replies
MY family and I all have VHL except for my sister can her son be a carrier and should he be tested ...

kidney transplant

By eramsteven · New reply March 6, 2010
Discussion in Health management issues · 8 replies
I have VHL and need a kidney transplant because the cancer keeps coming back. I also have a neuroendocrine tumor on my pancreas. Does anyone know if the tumor on my pancreas needs to be removed before ...

kidney cysts

By Dreamer21 · New reply March 6, 2010
Discussion in Health management issues · 3 replies
Diagnosis of multiple cystic lesions in both kidneys, exophytic in nature. One surgeon wants to do a partial nephrectomy and the other wants to do a CT guided cyst aspiration. CONFUSED ...

Hypercalcemia?

By Myway · New reply March 6, 2010
Discussion in Health management issues · 8 replies
It is sometime now since I last wrote, my son is now on a ventilation ward where they are fine tuning his settings for night time ventilation. He is still recovering well but this is an incredibly slow ...

vhl

By lorna40 · New reply March 5, 2010
Discussion in Getting a diagnosis · 11 replies
my sister has this vhl, she has burning and numbness running up and down the right side of her head, face and neck, does anyone share this symtom as well as banging headaches lasting weeks at a time ...

Skin tummors

By lety · New reply March 5, 2010
Discussion in Getting a diagnosis · 1 reply
My sister has VHL and has lots of tummors through out her body. Does anyone know if with VHL it is possible to get tummors on the top layer of the skin? My sister doctor thinks it might be animial (insect ...

Ten Months out

By plischeske · New reply March 4, 2010
Discussion in Finding emotional support · 15 replies
On December 17th, 2007 I underwent surgery at UCSF in which they removed a pretty big hemangiomablastoma from my cerrabellum. Another Surgeon had tried to remove it back in 1994, but was worried about ...

World Rare Disease Day

By Brian · New reply March 4, 2010
Journal · 14 replies
In recognition of Rare Disease Day 2010, Inspire and the National Organization for Rare Disorders conducted a survey of Inspire members with rare disorders. The results are enlightening, and I encourage ...

Cyber Knife surgery for brain tumor of size 5cm above

By sreeni · New reply March 3, 2010
Journal · 1 reply
Has anybody else experienced complications from cyber knife brain surgery? My wife has had two surgeries in the past and she is surveying with multiple tumors since 2000 and unfortunately, one of the ...

Muscle Spasm

By lety · New reply March 2, 2010
Discussion in Getting a diagnosis · 6 replies
I have been having problems with my neck , right shoulder, part of my chest and even my hand. The doctor order a MRI for the entire spin and the only thing that comes up is that the muscle are all tense ...

Dr Jeff Saver @ UCLA

By lgsdaughter · New reply March 2, 2010
Discussion in Finding a doctor · 3 replies
Hello all, Does anyone have any experience with Dr. Saver? My mother is at the point of needing to change neuro docs due to lesions getting to the point of surgery, particularly two in her brain stem ...

Pediatric retina specialists in Denver

By n8writer · New reply March 2, 2010
Discussion in Finding a doctor · 2 replies
I'm wondering if anyone can recommend a pediatric retinal specialist in Denver? My son was confirmed in DNA testing to have VHL, and has no manifestations yet. We went and did his first routine retina ...

Treatments for edema in eye

By n8writer · Posted March 1, 2010
Discussion in Health management issues · 0 replies
Hi everyone. I wanted to seek some advice and see what kinds of treatments other VHL patients have had for the cystic macular edema (CME) that has developed after battling the retinal lesions for years ...

liver cysts

By docswife · New reply February 28, 2010
Discussion in Finding emotional support · 7 replies
My daughter just had a CT scan last week and revealed that she has cysts on her pancreas now on her kidneys which I also have but she also has them on her liver I just wanted to know if any one else with ...

Sign in to see more

Inspire others

Together we're better - VHL Family Alliance Support Community

Support your group with badges for your e-mail, website, blog, and more ...

Group leaders

Discussion topics

You

About this group

The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration. The VHL Family Alliance Support Community is sponsored by the VHL Family Alliance in partnership with Inspire.