Blue Sky Thinking

I've been keeping up to date with the world of FSP/HSP, although perhaps not as pro-actively as I should be given the family history. I know that, presently, there is no cure for the condition, and that there are no potential cures expected soon.

However, when I wear one of my more optimistic hats, I may expect that at some point in the future some kind of cure or treatment may be developed which might be of benefit to the next generation - i.e. my child.

There has been quite a bit in the press recently about developments with stem cells and genetic research, and my optimistic head joins this neatly with HSP in the future, either as a direct cure for the condition, or perhaps more generally a way to re-generate nerves (and I might reason that this kind of development might be more likely?)

One of the drivers for deciding to have the genetic test was being able to consider the possibility of having the blood from the umbilical cord stored for future use (at the birth, once our child is no longer using it, of course!) This blood is metaphorically "full" of stem cells, and having it in storage may be of benefit in the future.

OK, so there are a lot of unlikley things that need to happen together for this to come to fruition, but that's the background to one of the reasons for thinking about having the test.

The Big Decision

In the summer of 2008 we found out that my wife was pregnant. This presented us with a big question: Should I get a genetic test to find out if I have HSP? My wife and I discussed this with the good people at our local genetics team.

Pro's for having the test:
* We would know for sure if there was a chance that I could pass the condition to our baby.
* If I had the condition, I would be able to plan for the future.

Pro's for not having the test:
* Finding out that I have the condition may adversely affect my outlook on life (or at least certain aspects of it).
* Having a genetic test may adversely affect me financially, e.g. future insurance applications.

In the end, for me, the pro's for having the test won over the pro's for not having the test, and, after a little uncertainty, it was clear that I should be tested.