My cousin was born with VHL of which she inherited from her father's family. She is not fimiliar with his family at all. Although she had her first brain operation at the age of 10 she was only diagnosed with the disease at the age of 41. She had 2 more brain operations in 1993 and 1995. In 2005 she was diagnosed with breast cancer and a year later she felt very ill and ended up once again in hospital. She was diagnosed for sugar until further tests revealed VHL. At that time it was just a name to us and the doctors was not very clear on this disease until I found more info on the internet. She just came out of hospital after another setback and I can see she is very scared and is in denial. I love her very much and know I will be the one to look after her. I need to be in contact with somebody whom can help me to understand this disease and how to care for my cousin. Nobody, not even the medici, seem to know about VHL. For them it is just a name, but they do not realised the seriousness of it.
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Understanding VHL and care for my cousin
- By Sheilin
- Posted April 12, 2008 at 3:56 am · 8 replies
- In Tips for caregivers
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- By Sheilin
- Posted April 12, 2008 at 3:59 am
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Please help me to understand VHL and how to care for my cousin emotionally and physically.
- By gale
- Posted April 13, 2008 at 10:03 am
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It seems every family has at least one person in denial.
The VHL Family Alliance just had their first VHL meeting in South Africa. Hopefully you were able to attend. See:
http://www.vhl.org/meetings/meet2008/johannesburg.htm
http://www.vhl.org/newsletter/vhl2008/08ayafrica.php
I would also suggest you get a VHL handbook if you haven't done so already.
You can email info@vhl.org with your mailing address for a handbook. I think the above would be a good place to start.
Gale
- By Sheilin
- Posted April 14, 2008 at 2:45 am
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Cannot get access to site for next VHL meeting. Are very interested!
- By gale
- Posted April 15, 2008 at 8:01 pm
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Do you mean in South Africa? I don't think one is scheduled right now, but perhaps Joyce has additional information since she was just there.
Our next meeting is scheduled in Orlando, Florida on June 28. I hope many of you will be able to make it.
Gale
- By Sheilin
- Posted April 16, 2008 at 3:10 am
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Hi Gale!
I have been in contact with Markus about VHL in SA and it seems like he is also involve in a support group. I contacted him this morning and we will have a discussion during the day. Of cause we cannot afford going to Orlando for the meeting and just hope that in a way we can also benefit in your discussions via internet. Will keep you posted on the issue with Markus.
- By gale
- Posted April 16, 2008 at 9:12 am
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Good luck, and remember we are here if you ever need us! I believe the meeting in Orlando will also be taped, but I really enjoy meeting others that are dealing with VHL.
One year there was a meeting in Rochester and a number of people came from other countries that I, and probably others were communicating with for a while. We still keep in touch.
Sending you the best......
Gale
- By Sheilin
- Posted April 16, 2008 at 11:01 am
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Hi Gale
Like you say, it is always good to stay in touch for a cause like this and I would like to keep it that way if you don't mind. I spoke to Markus this morning and what he told me on the phone, is astonishing! It gives me so much hope, not just for my cousin, but for myself also. The support group is in a 'beginners stage' at this moment and he have done so much already to get it up and running. Although I do not have the disease myself, I feel like doing the world for his group. I spoke to my cousin after that call, and she sounded very very positive. In fact, she does not feel well after being discharged from hospital last week, but I could hear the positive change in her voice after sharing the news with her. Also, Markus is in touch with Joyce in Boston to help him establishing the group.
Look forward to hear from you!
Always the Best!!!!!!
- By gale
- Posted April 16, 2008 at 9:28 pm
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Hi Sheilin,
Knowledge is power! You don't have to have VHL to help his group. I'm sure Markus would welcome you with open arms.
The office has a list of things people can do in their state or country. Although, what works in one area might be different in another location. You guys can probably tell the office what works for you and we can all learn by it.
Using your imagination and energy anything is possible!
Welcome aboard!
Gale
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