VHL Family Alliance Support Community

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Having Children?

By Christine29 · New reply 10:44 am
Discussion in Parenting issues · 1 reply
I'm a 30 year old female, I'm not married but have been in a serious relationship for over 10 years. I was diagnosed with VHL earlier this year. VHL does not run in my family, so this is all new to me ...

VHL and confused!

By Caterine · New reply yesterday at 1:10 am
Discussion in How my diagnosis changed my life · 5 replies
I feel like my family and I are the only one's from Montreal, Canada registered on this site. I'm new at this... I have 2 boys and I just found out that they both have vhl. My healt issues seem pretty ...

brain tumors and AVASTIN

By pegasus1976 · New reply July 29, 2010
Journal · 4 replies
my husband has had 2 brain tumors and now on a possible 3rd the Dr's. are wanting him to try the drug AVASTIN, this is a hard decision because of the risks. I was really hoping to talk with someone that ...

HLRCC?

By Txmommy26 · New reply July 27, 2010
Discussion in Kids and teens · 8 replies
Hello, We just found out that our 10 year old daughter has HLRCC. I know this isn't the group for that but the HLRCC website said that people could post here. We've been on a rollercoaster for a year ...

Bile Duct Cancer

By capodad · New reply July 27, 2010
Discussion in Financial and insurance issues · 4 replies
Wow, so glad I found this support site Thought I/we were alone...My wife was diagnosed with the horrible Bile Duct Cancer just over a month ago, 7/1/2010 after going to the ER with severe jaundice on ...

vhl

By pavis · New reply July 26, 2010
Journal · 11 replies
I was diagnose with vhl in january 2010. I would like to have friends that have the same condition so that I can talk to them and ask them questions about this disease ...

guilt over having vhl

By raekel · New reply July 22, 2010
Journal · 14 replies
i believe there have been journal entries about the feeling of guilt associated with the possibility of having passed on the vhl gene to our children. my 4 adult children have opted to not be genetically ...

eye tumors

By lina333 · New reply July 22, 2010
Discussion in Getting a diagnosis · 4 replies
I'm going to a Dr. soon, but I'm just a little worried. If any of you have suffered this eye stuff did you have a protruding eye and see floaters associated with a tumor? Also one last question...in your ...

Pancreas tumor

By lelelia · New reply July 21, 2010
Discussion in Getting a diagnosis · 14 replies
In 97 a lesion was found on my pancreas and it was unknown at the time if it was a cyst or not. It was watched and just recently it has grown to the size of 24mm x 26mm. After a biopsy they told me I ...

Chuvash polycythemia

By joyceg98 · New reply July 16, 2010
Discussion in Health management issues · 1 reply
We have been contacted by a family with Chuvash polycythemia. This is caused by a change in the VHL gene, but does not have the "classic" symptoms of VHL, only the polycythemia part. http://www.vhl.org/newsletter/vhl2003/03 ...

The difference is a few votes

By RobinCo · New reply July 13, 2010
Discussion in How my diagnosis changed my life · 2 replies
The difference between place #180 and #200 at the Chase Challenge which is granting $20,000 to the top 200 vote getters, is 15 votes. The contest is over and decided on July 12th. Literally one vote ...

decadron or dexamethasone

By raekel · New reply July 13, 2010
Discussion in Medical treatments that worked for me · 4 replies
i have been taking decadron for 4 years because of a brain tumor that was treated with cyberknife. the decadron helped with the brain swelling, but now my doctor wants to wean me off of it. has anybody ...

pheo testing in children

By marie3 · New reply July 8, 2010
Discussion in Health management issues · 7 replies
Hello friends. Remember when I was inquiring about specimen caps for test tubes when having a blood draw (lavender or green), particularly the plasma free metanephrine test? Well, my son's plasma free ...

The difference is a few votes

By RobinCo · Posted July 8, 2010
Discussion in Health management issues · 0 replies
The difference between place #180 and #200 at the Chase Challenge which is granting $20,000 to the top 200 vote getters, is 15 votes. The contest is over and decided on July 12th. Literally one vote ...

Would you please help?

By joyceg98 · New reply July 6, 2010
Journal · 5 replies
Would you please go to http://greatnonprofits.org/reviews/profi le2/vhl-family-alliance and write a "review" of the VHL Family Alliance? There is a contest there, and if we have at least 10 reviews we ...

Facebook users -- we need you!

By joyceg98 · Posted July 6, 2010
Journal · 0 replies
Please take a few moments to VOTE for VHL in the Chase Community Giving contest going on now through July 13 in Facebook. http://www.tinyurl.com/vhlchase Not in Facebook? Please ask your children, your ...

PRAYERS AND GOOD THOUGHTS NEEDED

By eramsteven · New reply July 4, 2010
Discussion in Kids and teens · 16 replies
My son, Michael will be having surgery on June 28 to remove 2 pheos from his left adrenal gland. We will be travelling to NIH on June 22 for pre op testing. Please keep us in your prayers and thoughts ...

Support your group and raise awareness with badges

By Walter · New reply July 4, 2010
Journal · 71 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 ...

Drug Treatment Options for Brain

By Louise45 · New reply June 30, 2010
Journal · 3 replies
Hello every one. I had my MRI result on June 22,2010.And i found out that i have more brain tumors growing.I already had 4 but they are not growing.So now i have those new one's.So if you hear anything ...

Eye tumors

By VALPO · New reply June 27, 2010
Discussion in Getting a diagnosis · 1 reply
can major tumor activity inthe eys lead to brain tumors. What % of the time do tumors show up elsewhere when first seen in the eyes ...

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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.