I agree that I haven't seen it anywhere except this article that Michael Phelps has Marfan's. He has a right to privacy about this BUT I hope that if he does have it that he will go public with it and raise awareness and further research.
Michael certainly has several of the outward symptoms but some people can have those and not have it. If he has it then it could be genetic or a sporadic mutation that caused it. Either way his family members, close and extended need to be looked at as well.
I have two daughters thought to have had it but it turned out that they have Loeys Dietz Syndrome another connective tissue disorder that is closely related to Marfan's as is Ehler Danlos Syndrome. Even though they are sisters they have different physical characteristics: one is six feet tall with two curves in her spine, long fingers, hypermobile joints, etc.; the other is only 5'7" with pectus excavatum, blue sclerae,hypermobile joints, a bifid uvula, etc. They both went through a clinical evaluation and blood work that gave us a definite answer. They both have their heart checked annually and to date have had no restrictions though we practice no impact sports or highly strenuous activity that causes too much stress on their body. Fatigue is a huge issue for them and one of them has had Crohn's Disease, also. My main concern for them are aneurysms or organ ruptures due to the weak collagen/fibrillin as this is how their father died, (a brain aneurysm), at the age of 38 when they were just toddlers. He also had been a runner and his heart was never affected...
My girls are blessed in that they we have a diagnosis and that their health issues to date have not been as severe as many with connective tissue disorders. Research and education is very much needed as many even in the medical community don't know about connective tissue disorders and therefore people go undiagnosed and untreated. You have to learn how this disorder can affect everything about your body and thus become your own advocate... I believe that this disorder along with all connective tissue disorders is more common than it is now thought but people just don't know...
AWARENESS LEADS TO KNOWLEDGE AND KNOWLEDGE LEADS TO HELPING YOURSELF AND HELPING OTHERS.
Submitted by Tina (not verified) on August 21, 2008 - 5:24pm.
Loeys Disease, ETC
I agree that I haven't seen it anywhere except this article that Michael Phelps has Marfan's. He has a right to privacy about this BUT I hope that if he does have it that he will go public with it and raise awareness and further research.
Michael certainly has several of the outward symptoms but some people can have those and not have it. If he has it then it could be genetic or a sporadic mutation that caused it. Either way his family members, close and extended need to be looked at as well.
I have two daughters thought to have had it but it turned out that they have Loeys Dietz Syndrome another connective tissue disorder that is closely related to Marfan's as is Ehler Danlos Syndrome. Even though they are sisters they have different physical characteristics: one is six feet tall with two curves in her spine, long fingers, hypermobile joints, etc.; the other is only 5'7" with pectus excavatum, blue sclerae,hypermobile joints, a bifid uvula, etc. They both went through a clinical evaluation and blood work that gave us a definite answer. They both have their heart checked annually and to date have had no restrictions though we practice no impact sports or highly strenuous activity that causes too much stress on their body. Fatigue is a huge issue for them and one of them has had Crohn's Disease, also. My main concern for them are aneurysms or organ ruptures due to the weak collagen/fibrillin as this is how their father died, (a brain aneurysm), at the age of 38 when they were just toddlers. He also had been a runner and his heart was never affected...
My girls are blessed in that they we have a diagnosis and that their health issues to date have not been as severe as many with connective tissue disorders. Research and education is very much needed as many even in the medical community don't know about connective tissue disorders and therefore people go undiagnosed and untreated. You have to learn how this disorder can affect everything about your body and thus become your own advocate... I believe that this disorder along with all connective tissue disorders is more common than it is now thought but people just don't know...
AWARENESS LEADS TO KNOWLEDGE AND KNOWLEDGE LEADS TO HELPING YOURSELF AND HELPING OTHERS.