Genetic myths

joyceg98
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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.

8 replies

Beverly2
  • By Beverly2
  • Posted August 15, 2008 at 4:53 pm

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".

joyceg98
  • By joyceg98
  • Posted August 15, 2008 at 10:37 pm

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

sunda1
  • By sunda1
  • Posted August 16, 2008 at 5:31 am

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.

JennyBlue
  • By JennyBlue
  • Posted August 16, 2008 at 8:00 am

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... :-)

gale
  • By gale
  • Posted August 16, 2008 at 9:29 am

We were told only men get VHL.

GJS

minimammax4

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!

donnab
  • By donnab
  • Posted August 26, 2008 at 11:44 pm

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

joyceg98
  • By joyceg98
  • Posted August 27, 2008 at 2:41 pm

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.

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