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New feature: video!

Brian
  • By Brian · New reply July 4, 2008
  • Journal · 11 replies
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

Latest VHL radio show

joyceg98
  • By joyceg98 · New reply July 3, 2008
  • Discussion in Health management issues · 3 replies
  • This week's radio show is about Appreciating Kidneys. In it we talk about how to take care of your kidneys, and what to do if they no longer work. I talk about my son's experience on dialysis, and about ...

This week's show - and VHLFA Orlando!

joyceg98
  • By joyceg98 · Posted July 3, 2008
  • Journal · 0 replies
  • The guest on the Powerful Patient this week is a member of this support group. See if you can figure out who it is! It's a conversation about blogging, and the value of blogging in her life. The Orlando ...

Why are we here?

Brian
  • By Brian · New reply July 1, 2008
  • Journal · 67 replies
  • When we started this community, each of us faced important health issues in our lives. Some of us have family members with medical conditions. Many of us have medical conditions of our own. All of us ...

VHL?

shannonMN
  • By shannonMN · New reply June 29, 2008
  • Discussion in Getting a diagnosis · 1 reply
  • 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 ...

VHL Tests

Bandit00
  • By Bandit00 · New reply June 28, 2008
  • Discussion in Getting a diagnosis · 41 replies
  • I have a friend that went to the hospital one night for what she thought was kidney stones. After she got there they discovered a 10cm mass on her kidney, some cysts on her pancreas and some spots on ...

Support your group and raise awareness with badges

Walter
  • By Walter · New reply June 28, 2008
  • Journal · 28 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 ...

seen by NIH

kimbre
  • By kimbre · New reply June 28, 2008
  • Discussion in Finding a doctor · 10 replies
  • Hi, I am newly diagnosed with VHL having renal cell carcinoma. I have had 2 opinions from kidney surgeons here in Seattle, WA. I know that there is a Dr. Linehan at NIH that is the expert on this (for ...

Auditory Canal Tumor

Rick
  • By Rick · Posted June 26, 2008
  • Journal · 0 replies
  • I have a tumor in my auditory canal. After several discussions with two different neurosurgeons both seperately and them together (one does conventional surgery only and one does both conventional and ...

Phacomatosis

marie3
  • By marie3 · New reply June 25, 2008
  • Discussion in Finding a doctor · 4 replies
  • Hello all. I went to a different type of a doctor today for a complete evaluation. He practices Traditional Chinese Medicine. I usually frequent a very reputable, teaching hospital here in Chicago. My ...

New feature - profile completeness gauge

Tasha
  • By Tasha · New reply June 25, 2008
  • Journal · 4 replies
  • Greetings from TeamInspire! I'm your friendly neighborhood designer, here to tell you about some new features. You might notice that today we revamped your member homepage - https://www.inspire.com/member-home.pl ...

Spinal Hemangioblastoma - Colorado Springs, CO

Ed-ColoradoSprings
  • By Ed-ColoradoSprings · New reply June 23, 2008
  • Discussion in Finding a doctor · 11 replies
  • Found out my son has a hemangioblastoma in the lower spine. Would like to know if anyone has worked with any doctor in Colorado familar with this specific problem. Thanks ...

Oprah's Big Give

chewbacca1965
  • By chewbacca1965 · Posted June 22, 2008
  • Discussion in How my diagnosis changed my life · 0 replies
  • This is for my brother that was given a chance to drive again thanks to Oprah's Big Give and our local ABC station, that was given $20,000, to make dreams come true for some deserving people in our area ...

Improvements to the message system are complete

Walter
  • By Walter · New reply June 22, 2008
  • Journal · 14 replies
  • Hello everyone. Just a quick note to let you know that the improvements to the message system that I wrote about previously are complete. You can check them out now. You'll notice that we've grouped your ...

Recovery time after surgery?

heavenlykaelee
  • By heavenlykaelee · New reply June 22, 2008
  • Discussion in How my diagnosis changed my life · 6 replies
  • I would like to hear about peoples experiences with this. I was diagnosed with VHL last February with numerous tumors on my kidneys. My father had VHL and passed away in 98' after having his kidneys removed ...

Orlando VHL Conference/Meeting

gale
  • By gale · New reply June 21, 2008
  • Discussion in Finding emotional support · 1 reply
  • I hope this note finds everyone doing their best. Knowing this can be different for different people, we created a meeting with you in mind. Please come join us on the 15th Anniversary that the VHL Family ...

the word terminal

batley
  • By batley · New reply June 21, 2008
  • Discussion in Getting a diagnosis · 3 replies
  • does anyone used the word terminal with vhl , i have heard a few people say this and other who argue otherwise, i see it as no cure for an illness and its life time thing , like cancer i supose, is this ...

Ringing in my left ear and short term hearing loss

Rick
  • By Rick · New reply June 17, 2008
  • Discussion in Getting a diagnosis · 5 replies
  • Has anyone ever experienced ringing in the ear as a delayed afteraffect of Radiosurgery? Ringing in my ear developed a couple of weeks ago and I experienced hearing loss that lasted a couple of days or ...

update on scans

batley
  • By batley · New reply June 14, 2008
  • Discussion in Getting a diagnosis · 3 replies
  • hi people , update on my results , from my mri , brain and spine , i got quite a few more small tumors in brain and spine , my neruo sergon dont think my hadpain is commin fron these, what shocked me ...

VHL test!!!!!!!

Chiquilla_336
  • By Chiquilla_336 · New reply June 12, 2008
  • Discussion in Getting a diagnosis · 4 replies
  • Hello everyone, today i had my VHL test done at Dana Faber, I will get the results between 2*3 weeks. Mom is more nervous than I..... Its not that dont care because i really do but she doesnt get it ...

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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.