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i was wondering if anyone would be interested in doing an interview for my senior reaserch project i have decided to do it on VHL and i don't know much about it . If you could send me information on how you deal with it in real life that would be great thank you for your time.
sincerely
amanda
Amanda,
If I may make a suggestion - make a list of questions you specifically want
answers to and, I imagine, most of us would be happy to do just that. A
generic "tell me about it" is a little hard to do and can cover such a wide range
of problems. We are always happy to help increase awareness and
understanding of our little known or understood disease.
Linda
Amanda,
Linda is right. There are so many aspects of VHL that one can discuss. Specific questions would certainly help. I would be glad to share my experiences with you.
Ryan
Amanda-
Would love to help you with your project. The more VHL infor that gets out there, the faster a cure will come. These people are right about how VHL effects different people different ways. It truly is a very individualized disease. We were just diagnosed in 2006, and it is me and my three children that have it. To me the hardest part of dealing with the disease is the doctors that don't know how to say "I don't know what is wrong or what to do". So often VHL patients are charted as "seeking medical attention". If only these doctors would say "I don't have a clue or even a we are going to have to learn together".
I guess the best advice I have ever been given was given to me by my uncle who is a cardiologist. When my tumors were found and VHL diagnosed he was very up front with me. I needed a top notch internal med doctor. He advised me to go in really repaired to deeply explain my symptoms. He encouraged me to talk to my doctor and ask him if he would be the "quarterback" of my medical care. He can keep me screened and then when it becomes apparent that I need one of my specialist he can send me to them. The doctor I chose was thrilled to work with me. What a blessing that has been.
Another difficult part of the disease is simply functioning from day to day. Because VHL affects so many different parts of the body many of the meds will fight against each other. My adrenal were removed in June. Yet, it was this fall that I finally figured out what was keeping me in trouble the beginning of every week. My husband and I are the biggest football fans. And, we are originally from Louisiana so our favorite team (since we were kids) has been the New Orleans Saints. If anyone has watched football this year they know that the Saints have pulled the greatest season in franchise history. Well, I would get so worked up on Sundays watching my beloved Saints. (There ain't nothin better than 'passin a good time' at our house during the Saints games. Apparently I get so worked up during the games that I go through a small crisis every monday after. I don't know what I will do next year. Yet, I thought that my emotional state would not effect me. I guess I am wrong.
Amanda,
If you are still looking for more material for your senior research on vhl, I will be happy to do an interview. Just let me know by contacting me on this site.
Larry
I echo the other suggestions - but want to add that you may want to read my blog plus all my other comments to others. Typing is extremely difficult for me since I don't have much use of my hands. I would welcome talking to you on the phone, too - just not sure how to give you my phone # in a safe way................
Hi Amanda
If you still need ppl to interview for you research i will be more than happy to help! If you contact me via this site I will give you my msn addy and we can talk properly on there.
Hopefully speak to you soon.
kim
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