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Did you attend the conference? Why? or Why not?

By joyceg98 · New reply yesterday at 2:40 pm
Journal · 1 reply
Let's talk about the pros and cons of attending a patient conference. What are the benefits? or what kept you away? We would like to learn, so that we can serve you better. http://bit.ly/14wRzy The radio ...

Alone you'll self destruct

By FridayThe13th · New reply yesterday at 2:30 pm
Journal · 16 replies
I've taken a bit of time looking through other people's journals on here today. There's hope, love, and families who've been made stronger because if nothing else is shared they share an illness. Sad ...

My son

By Porq · New reply yesterday at 2:08 pm
Journal · 3 replies
May 7th, 2009 is a day that I will never forget. It started out with that dreaded phone call at work insisting that I get home immediately. What was supposed to be a somewhat normal doctors visit for ...

VHL???Maybe???

By Porq · New reply yesterday at 1:54 pm
Discussion in Getting a diagnosis · 6 replies
My son recently spent a month at Mayo Eugenio Litta Children's Hospital to stabilize his bp and lower his heart rate before they could take out his 3 pheos and both adrenals. During this time he was tested ...

Heading to Maryland Sunday and Hare Krishna

By FridayThe13th · New reply yesterday at 1:22 pm
Journal · 1 reply
It's almost that time. Time to go get this over with. One more day at work then the infamous "VHL Vacation" I just keep reminding myself..."It is what it is". I stopped the other day to think about it ...

Questions about Transplant?

By joyceg98 · New reply July 2, 2009
Journal · 3 replies
Thinking about whether to sign that donor card at the registry of motor vehicles? Or are you in a situation where you could benefit from a donated organ? Bring your questions about transplantation to ...

Adreanal Insufficiency No More

By VHLDNA · New reply July 2, 2009
Discussion in How my diagnosis changed my life · 10 replies
I had my bilateral adrenalectomy in 1986 and have been on hydrocortisone ever since. My current endocrinologist who I have been seeing for about one year has been concerned with the low dose I take. He ...

Care Plans in the UK

By joyceg98 · New reply July 1, 2009
Discussion in Health management issues · 4 replies
I understand that the UK National Health System has set a goal that everyone with a long-term condition be offered a Care Plan by June of 2010. Has anyone approached you about this? Have you requested ...

support

By teray · New reply July 1, 2009
Journal · 5 replies
Help my husband is living with vhl had a pheo removed 10 years ago. Its back but cant locate it. Also has a cyst in the brain is living with severe pain in arms and legs. There are days weeks months he ...

Watch out for Prozac!

By investigator2009 · Posted July 1, 2009
Discussion in Health management issues · 0 replies
My mother has VHL, and we all know that there is something different in each of us that changes our health state. Well, for her, tumor growth always happens when she is stressed or depressed. At both ...

living with vhl is difficult

By teray · New reply July 1, 2009
Discussion in Finding emotional support · 3 replies
looking to discuss ways of living with vhl disease ...

Pheocromocytoma

By beod · New reply July 1, 2009
Discussion in Fundraising and raising awareness · 5 replies
I have whats called a "Pheo" in the medical world, or a tumour on my adrenal gland. I've started a blog to document my experience and provide a little insight for anyone going through a similar situation ...

tumours on the optic nerve

By diaryofageneticdefec · Posted June 30, 2009
Discussion in Health management issues · 0 replies
I've known about the tumour on my opic nerve for over 10 years now. It grew a little when i was pregnant a couple of years ago but just this week it bled. I'm waiting to hear from my consultant what he ...

thanks for support

By teray · Posted June 29, 2009
Journal · 0 replies
thank you to everyone who responded. We will be better prepared with questions for our appointment in boston ...

Proper Leader of Treatment Team for Patient with Brain Tumors/Seizures

By lgsdaughter · New reply June 28, 2009
Discussion in Finding a doctor · 11 replies
Hello everyone. I'm new here and this is my first post. I'm the daughter of a 67 year old woman with VHL. It seems that her symptoms, mainly seizures, are getting worse. At the beginning of the year she ...

Support

By Lamariposa · New reply June 25, 2009
Journal · 15 replies
My husband was diagnosed with VHL in 1996. He recently went through his 4th surgery and is starting to have a difficult dime dealing with everything. I am as supportive as can be. However, he thinks that ...

kerry martin

By kez02m · New reply June 25, 2009
Journal · 6 replies
My name is Kerry on the 3rd of december 2004 my husband lost his eye sight was rushed to hospital later he was diganosed with vhl in febuary 2005 tumors in adernals,kidneys,brain,spine eyes, lung liver ...

Questions about how drugs get approved?

By joyceg98 · New reply June 25, 2009
Journal · 1 reply
I'm talking this afternoon (Wednesday) with Marlene Haffner, former head of the Orphan Drug section of the FDA. This came up relatively quickly, as we had to squeeze it into her busy schedule, but the ...

Avastin/Lucentis feedback

By chrisbonin · New reply June 24, 2009
Discussion in Medical treatments that worked for me · 19 replies
Hi I'm looking for feedback from people that have had trials with Avastin & Lucentis, especially anyone who has an angioma on their optic nerve. I'd like to hear your views on the success of your treatment ...

Support and Other Things

By FridayThe13th · New reply June 24, 2009
Journal · 2 replies
First of all I just wanted to say thank you to everyone who replied to my last post. I think I was a little overly emotional when I posted that entry, but no it wasn't a cry for help or anything of the ...

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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.