I'm curious -- what family lore was in your family about how VHL was inherited, or where it began?
- only affects boys
- only affects girls
depending on who had VHL in the family. But other things, too.
I'll start with a couple of my favorites. THESE ARE MYTHS.
(1) from Markus: a doctor told him that VHL skipped three generations. So since his father had VHL, he would be okay, his children would be okay, but his grandchildren might be affected. (20 years later, Markus has VHL, and his son has VHL).
(2) In my husband's family we were pretty sure it was inherited from his grandmother's side of the family, who was born in Sweden. So the family lore was that there was an enterprising Viking who had traveled the world, spreading VHL wherever he went.
(3) One I received in the mail today that VHL originates when the children of a cousin-marriage intermarry for three generations. The third generation will have VHL.
REMINDER: THESE ARE MYTHS. THEY ARE NOT TRUE.
Please add some more myths or questions about origin or inheritance of VHL.
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Genetic myths
- By joyceg98
- Posted August 15, 2008 at 3:06 pm · 18 replies
- In Finding emotional support
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- By Beverly2
- Posted August 15, 2008 at 4:53 pm
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I don't believe this falls under "myths", but I was told by a neuro-ophthamologist that if you have no lesions in your retinas you only have "Lindau disease".
- By joyceg98
- Posted August 15, 2008 at 10:37 pm
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That's a good one. We were told the same thing...until he developed a brain tumor, which then added the Lindau's disease as well. Now we understand that these are all the same disease, just different phenotypes or different stages of progression.
Thank you,
Joyce
- By sunda1
- Posted August 16, 2008 at 5:31 am
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I was told by another VHL patient, presently on dialysis with me that VHL was a version of neurofibromatosis which attacks the inside rather than the outside. The above which I cant pronounce was the Joseph Merricks (elephant man) condition. Out of curiosity I asked my consultant about this, she rejected this as without merit, stating that a lot of diseases attack the skin, blood vessels and organs. If they all attacked in the same way or with the same frequency then we would have but one disease and no requirement for doctors or researchers. Makes sence.
- By JennyBlue
- Posted August 16, 2008 at 8:00 am
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Similar to the Swedish myth, the disease seems to have come from my paternal grandfather. So, the myth was about Germans, and some experimental 19th century fertilizer that was given by the German government to poor farmers to help their crops grow. Which by using it, somehow changed their genetic make-up and made their children sick. This story came from my grandpa's parents, so I guess it is a pretty old government conspiracy theory... :-)
- By minimammax4
- Posted August 16, 2008 at 4:00 pm
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I found that the story of the hatfields and mccoys was interesting! The way it hit the news, people believed that this was the whole reason the feude went on for so long. Is this a myth?
I too have heard the same myth that Beverly listed! Interesting!
- By donnab
- Posted August 26, 2008 at 11:44 pm
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My Aunt was diagnosed with VonHippel of the eyes in 1916. She was told her children wouldn't inherit the disease. My Aunts daughter started having eye problems in her teens and eventually lost an eye to it. My Aunt told her that she got "bad blood". When I was diagnosed my Aunt was amazed that I somehow got this same disease and also had "bad blood".
All the other stuff (brain tumors, etc) that happened in the family was chalked up to bad luck, that side of the family seems to have more than it's share of "bad luck". LOL
- By joyceg98
- Posted August 27, 2008 at 2:41 pm
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When I was in Melbourne, Australia, for a VHL meeting some years back, there was one family that drove hours to come to Melbourne for the meeting.
They told me that 16 living members of their family had had brain tumors.
At least three times during all this, three different people asked three different doctors whether this might mean that there was something running the family that was causing them to have so many brain tumors.
And three different doctors replied that "it's just a run of bad luck."
Some people seem to have more bad luck than others. LOL.
- By Jennifer09
- Posted August 16, 2009 at 11:51 pm
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Fortunately, there was no family lore, as dad was the first and only one in his family to have vhl (youngest of 5).
Unfortunately, we felt it bought shame on the family, or we were guilty of something, didn't know what but we shouldn't talk about it and stick together as a family.
That was all quite ridiculous, because it became bigger than all of us, with 2 out of 3 children affected(this is where parental beliefs come into it and at that time 1969, there weren't a lot of people to talk to, not like to-day where counsellors are on every street corner. Then the issue becomes finding the right counsellor), but when you are a child you do as your parents direct.
We were also given lots of love and attention and I no longer feel guilty and realise I can't help what I was born with.
Even so, dad built up his business, which essentially was property development,and went to the gym to build up his wasted leg muscles after his one and only operation (I've had 8, go figure) my brother earned his economics degree, played guitar in a rock band and won an international art prize as an 8yold with a painting of dad building one of his buildings. And I've earned an a business studies degree, owned and operated a restaurant, travelled a lot and been involved in running the family company. My husband and I have socialised guide dog puppies (we LOVE animals , nature and food) and moved around so he could build up his career. The vhl gene has manifested virrilantly in all of us, but we've achieved regardless. My sister who doesn't have the gene (fortunately) earned an economics degree, counselling degree, has 2 children and is highly religious. I didn't get that gene, although I have a very strong spiritual base. I met the 1st person outside my family in 1992 (dx 1970) - so that was very exciting, and now I've met lots of you! And we were told there were probably only 4 people in the world with this rare condition! I knew that geneticist was wrong (at 13 - the wisdom of the young), that there had to be more of us and there are. It's good to share experiences. From here on in its self-respect.
- By live
- Posted August 17, 2009 at 5:30 am
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I was told by a geneticist that people with VHL all have above average IQ's, with tendency towards high IQ's. I used to smoke till a while ago and now wonder where that IQ might have gone to in my case.
I also hear that VHL becomes less aggressive as we age - well I hope this one's not a myth.
- By kleineflute
- Posted August 17, 2009 at 7:52 am
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My parents said the VHL gene came from a "Duke of Howard" in England, one of our ancestors. This duke was the first person to have the disease.
- By ALB
- Posted August 18, 2009 at 9:45 am
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My mother was told that her mutation was an isolated incident--she appeared to be a new mutation according to our family history--and that she was in no danger of passing the disease on to her children. I'd taken high school biology by the time this info was passed onto me so I should've recognized it's inaccuracy.
How foolish I felt when I was diagnosed through brain tumor symptoms. There goes my opportunity to perpetuate the "high IQ" myth ;-)
- By joyceg98
- Posted August 18, 2009 at 10:32 am
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I would love to hear more about the Duke of Howard. If you can supply some more information, I would appreciate it.
Great stories from all! Thank you so much.
Best wishes,
Joyce
- By elainef66
- Posted August 18, 2009 at 1:05 pm
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We were under the illusion that it only affected women: i.e. my husband's mother and sister... of our two kids only our daughter got it; go figure. But since my husband and it turns out a grandfather also have/had it we now know better.
- By MaryP
- Posted August 19, 2009 at 11:31 am
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My uncle told me my mother's disease was sexually transmitted from my father. (My uncle, of course, is from my mother's side of the family.)
- By joyceg98
- Posted August 19, 2009 at 4:25 pm
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Amazing how some people need to assign blame.
In my husband's family, my husband and his father had clinical diagnoses of VHL. So we were naturally curious about other medical issues in his father's family. When we went to discuss it with the grandparents, however, they were horrified that we thought there was anything wrong with the genes in their family.
"Not at all!", they declared. Their son's problems were the result of a high school football injury. If there was anything wrong with my husband's genes, it had to have come from his mother's family (the daughter-in-law did it).
Right. :-} We dropped the topic.
Joyce
- By BriannaB
- Posted October 20, 2009 at 10:48 am
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Vhl has EXPLODED through my family. My husband, brother in law, sister inlaw, father in law, all have it. And we are waiting results on my two kids and my two neices. My inlaws (the side who have it) have pretty much stuck their heads in the sand about it. Us (those in the fam that have it, or are married to it) stick together. I know there is no chance of it skipping generations or whatever, its all just a toss of a coin. But for us its weird. My father in law has VHL but has never had symptoms. His 2 boys (my hubby and brother in law) also have it but have many many problems because of VHL, whereas my sis in law she too has it but has not shown any problems or growths. I know its just coinciendence but it would be nice if thats how it worked. At least we woud know with who and with what generation is gonna be the most affected. That is #1 frustration with this disease is that it is so sparatic, no pattern to follow.
- By TinaDiane
- Posted October 20, 2009 at 11:14 am
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Please remember that anyone with VHL can get any of the VHL types of tumors at any time. No one is safe from having tumors show up. Please, everyone, keep up with your scans.
Best of health to us all,
Tina
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