W
Wolves of Babylon
Posts: 408
Nov 24, 2015 12:14pm
Would you participate or let your child participate in a medical trial?
My son has a genetic retina disease. Only females carry and pass it on but it only appears in males. Basically it causes progressive loss until teenage years then goes away until 60's/70's. The range of loss can be anywhere from 20/40 vision all the way to past legally blind. Very rare to cause black out blindness.
No known cures. Surgical or medical. We might have a chance to partake in a gene therapy trial with the hopes of curing disease and improving vision.
My son is 9. So take chance now or wait for FDA to eventually approve a cure years from now.
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My son has a genetic retina disease. Only females carry and pass it on but it only appears in males. Basically it causes progressive loss until teenage years then goes away until 60's/70's. The range of loss can be anywhere from 20/40 vision all the way to past legally blind. Very rare to cause black out blindness.
No known cures. Surgical or medical. We might have a chance to partake in a gene therapy trial with the hopes of curing disease and improving vision.
My son is 9. So take chance now or wait for FDA to eventually approve a cure years from now.
Sent from my VS986 using Tapatalk
ernest_t_bass
Posts: 24,984
Nov 24, 2015 2:07pm
Take the chance
GOONx19
Posts: 7,147
Nov 24, 2015 2:37pm
Medical trial for sure in this scenario. When there are standard treatments you have to weigh your risk/benefits of the investigational drug vs the standard. But when there is nothing currently available, I would go for it.
Q
queencitybuckeye
Posts: 7,117
Nov 24, 2015 4:55pm
Tough call. The issue is that if you go with this treatment and it isn't successful, it may disqualify him from a future treatment that might have better chances of success. Happened to a relative of mine.
sleeper
Posts: 27,879
Nov 24, 2015 5:01pm
If it was me, I would do it as long as I felt the research was solid enough or the people involved seemed credible.
W
Wolves of Babylon
Posts: 408
Nov 24, 2015 5:10pm
That is the tough part. Because you are right about being disqualified. No severe side effects from the medicine, can have issues from the injection but same for any eye procedure and very rare.
Other negative is it is at Michigan in Ann Arbor and my son detests Michigan but I think in this case we can let our fandom take a back seat.
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Other negative is it is at Michigan in Ann Arbor and my son detests Michigan but I think in this case we can let our fandom take a back seat.
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Uz2Bon36
Posts: 1,135
Nov 24, 2015 5:39pm
Explain to him that Jim Harbaugh is not a Doctor and as for schools, UofM really is a fine institution.Wolves of Babylon;1765597 wrote: Other negative is it is at Michigan in Ann Arbor and my son detests Michigan but I think in this case we can let our fandom take a back seat.
OSH
Posts: 4,145
Nov 24, 2015 6:20pm
I've been trying to do medical trials, but no luck in getting any.
I'm sorry to hear about your son. That's a tough call. It's hard to say what I'd do if it were my kid(s).
I'm sorry to hear about your son. That's a tough call. It's hard to say what I'd do if it were my kid(s).