kerry martin

• By joyceg98
• Posted October 28, 2007 at 7:42 pm
• Report post

Hi, Kerry. Welcome to the group. We're so glad you found us!

I hope you also found your way to the Prince of Wales Hospital in Sydney, where there is a very nice group of doctors who are quite knowledgeable about VHL. See our website for more information about this Clinical Care Center. http://www.vhl.org

What a terrible shock to lose so much vision so abruptly! I hope that you are getting good advice, to see how much of that vision might be recoverable. Depending what went wrong, it is often possible to repair at least a portion of the vision.

And if not, or even if it's temporary but will go on for months, it is important to make contact with services for the blind in your state in Australia and ask about rehabilitation services. My son lost his sight at 34, so I know what you are dealing with.

It is important for him to learn to walk independently, and do normal things around the house. It's important for his own self-respect and feelings of control over his life. He can do most of the things he always did before -- not driving of course, but most other things.

Reading - with the help of a text-to-speech reader for the computer
Books on tape or CD (there are very good lending libraries for people who can't use print)
Cooking - with a few adaptive aids and perhaps some dots on the dials on the stove
Woodworking - with a few adaptive aids

Walking with a cane or a dog will give him back a good bit of independence, take some pressure off you, and put him back having fun with his children as well.

I believe there are good rehabilitation services for the blind in most states in Australia. See what the state will offer (for free) to help him get back to feeling good about himself, and perhaps even back to work, or at least to a similar job that can keep using all his good knowledge and skills, with modifications to suit his new circumstances.

I hope things go well from here forward for everyone in your family. I hope you and Alan are getting some help dealing with all this emotionally. It is important to talk about it -- with each other, with a counselor, and with folks like us here -- to get your feet back under you and carry on with your life as normally as you can given the new circumstances. Don't just "buck up" -- I know Australians can be fiercely independent! -- but work it out, and work VHL into your life.

Please feel free to share anything at all with this great group here -- we've all been through bits of what you are experiencing and will be happy to help if we can.

Best wishes,
Joyce

• Reply

• By Blind_Kiwi
• Posted March 2, 2009 at 4:45 pm
• Report post

Hi from NZ, I stumbeled across your journal entry while on the inspire website. I too lost my eyesight to VHL in July 2007 and am still going through a massive learning process with the help of the foundation of the blind here in Auckland, NZ. If you or anyone needs to chat etc just send through an email. Its bloody hard going through vision loss as well as dealing with everything else VHL throws at you. I am also affected in my Brain, Spine, Kidneys at the moment. Anyway, feel free to drop me a line if you want to chat etc. Cheers Greg...

gregjohnson@orcon.net.nz

• Reply

• By pupa
• Posted March 8, 2009 at 4:03 pm
• Report post

My son is sufffering with vision loss now in his good eye, asc well as recent surgeries what hope can I give him, he is so brave but he is still my child the pain he feels emotional is devastating.

• Reply

• By teray
• Posted June 24, 2009 at 8:27 pm
• Report post

we are in same situation what were your husbands symptoms mine has alot of pain and cant get out of bed previous pheo now cysts in brain

• Reply

• By bnewbegin
• Posted June 25, 2009 at 9:52 am
• Report post

I just stumbled onto the is thread this morning. I wasn't aware VHL effects the liver and lungs. My doctors have not be screening in those areas. Is this something I should be doing?

• Reply

• By TinaDiane
• Posted June 25, 2009 at 10:28 am
• Report post

Those of us with VHL can get hemangiomas in our liver and a very small amount of the time pancreatic neuroendocrine tumors from the pancreas (if they are large enough) can spread to our livers. So, CT scans/MRI scans of the abdomen should be a beginning in the screening process.

The involvement of VHL in the lungs is documented.
Some folks get 1 or 2 hemangiomas in the lungs. I now have 20 lesions in my lungs. They found them by accident from an abdominal CT scan ( they saw a tumor on the base of my lung and then my MD ordered lung CT scans after that). I went to a pulmonologist, who had no idea what the lesions were. My lesions are growing/ multiplying from 5 to 20 now, and are quite rare. I am lucky enough to be going to NIH to a Thoracic (chest)
oncologist every 3 months to check on them. His original thought was they were hemangiomas, but now he and the Urology department thinks they may be paragangliomas (pheochromocytomas) in my lungs. I am in a pheo study and am going to have a special scan for them in July.
This is VERY RARE, so PLEASE don't worry about having this. I had bilateral pheos on my adrenals and had a bilateraladrenalectomy 22 years ago, so I am prone to pheos with my type of VHL.

I think that CT scans and MRIs are crucial parts of our screening.

Best of health to us all,
Tina

• Reply

Add to the discussion