The VHL Family Alliance: My Life with VHL

The VHL Family Alliance. My son, Noah, and I have Von Hippel-Lindau disease. VHL is a rare genetic disease that causes tumors to grow in specific places in the body including brain, spinal cord, eyes, kidneys, adrenal glands and more. The VHL Family Alliance supports families with VHL by providing information, education, and emotional support. Plus they fundraise and use the money to fund research into VHL.

Category:

Nonprofits & Activism

Tags:

• The VHL Family Alliance
• VHL
• children
• disease
• cancer
• genetic
• tumor
• illness

[caleb10909]

i got VHL too am making a video like this for the contest

[rennaisy]

Hi Caleb! If this is the Caleb we know, then the blanket you sent Noah is in one of the pictures. I think it is the second picture from the last.

[canonicus]

Hello, this Clark Corbin.

I met your family a few years ago when we were back at the N.I.H.. I pray all is well with you and Noah, and your family. God Bless.

[rennaisy]

Hi Clark! I do remember you! Thanks for watching the video, we are all doing well these days. I hope the same is true for you and your family.

Renee

[tbayfox]

This was a great video, is Noah ready to ride his bike when the snow finally melts. Sorry I missed him, Jane told me he was at the school again this semester. By the way It's Michelle from the fall.

[rennaisy]

Noah can't wait for the snow to melt so he can get on his bike! Thanks for watching Michelle, and thanks for all your help in the fall.

Renee

[eurordis]

Online Community for VHL patients created by VHL patient organizations can be found by Googling Rare Disease Communities.

This website is available in 5 languages with human translators working across all 5 languages. Come check it out today and post your experience with VHL. 

[markgg1]

@punkrocker0009 Dont be afraid, with regualr checkups of your eyes etc, will mean youll likely be fine

[punkrocker0009]

my mom and uncle has vhl and receantly my brother has been diagnose and i am so acared i have two boys and i am terrefied by it

[jddj46911]

Good luck buddy I have the disease 2 I haven't had a big surgery in like a year just a couple of small lasers I wish u luck great video

[bcgirl2007]

I too have vhl and was diagnosed when I was 13. By the time I was 18 I had four surgeries and countless laser treatments on my left eye to fight the tumors in my eye and throughout my body. I have not had a surgery in two and a half years so congradulations on your healthy three years. I wish you the best of luck and I agree we need a cure.

Your friend in the fight

Heather from TX

[vz18bleu]

bonjour de France

Je vous souhaite beaucoup de courage et de chance pour l'avenir.

Je vous remercie pour ses images.

Au revoir

Pierre de Vierzon en Sologne. France

[talusli]

thank you so much for this beautiful video. My daughter was just diagnosed with VHL at age 5, and this was such a wonderful way to learn more about the experiences of a child.

[dibeal2111]

Well done. Don't Give Up. Never Give Up. I have vhl too! -Diana

[AmyB753]

This is amazing. Thank you so much for sharing it.

My son has VHL,

God Bless you and be well....hugs,

Amy

[wendi26]

very well done video. Thanks for posting. wendi strauch mahoney