Comments on: Michael Phelps and Marfan Syndrome?

By: Laura Stoia

Laura Stoia — Wed, 23 Nov 2011 00:22:39 +0000

I wanted to share this with you. Today we took Joey too see the cardiologist per his diagnosis of Marfans syndrome. We knew we were there so that the cardiologist could prescribe him medication that would hopefully slow down the growth of his aortic root. I prayed last night and asked the Lord to deliver good news and be with the cardiologist and my family through the visit. The cardiologist opened the visit by asking if Joey has any difficulties with wheezing. I explained that he did during cold months and when needed he would use a Nebulizer. With this information the doctor had to prescribe different medication. I was under the impression from the initial visit with the Genetics counselor that this medication was only available if Joey would participate in a research study. I wasn’t to fond off him participating in this study, I didn’t want him to be anyone’s test rat!! However the cardiologist wrote the prescription for this medication and we will be picking it up at Walgreens later tonight. The first medication that would of been prescribed to Joey would slow down his physical activity level if we were to allow him to continue with baseball. However the medication that ended up being prescribed to Joey does not have this side effect. I then questioned the cardiologist about Joey playing baseball. The words out of his mouth were like hearing Jesus for the very first time. He stated to let Joey continue to play baseball, make sure he takes his medication daily, and he is continued to be seen to keep a close watch on him.
Jesus is awsome !

By: Allie Janson Hazell

Allie Janson Hazell — Tue, 22 Nov 2011 02:52:36 +0000

Hi Laura, Thanks for your note and sharing your story. Please note I am not an MD, and I don’t have any specific insight into Michael Phelp’s medical history– this was written as simply an interest piece. I have to say that you 100% listen to the doctors with respect to your son’s health. You should certainly not change any of your son’s management based on what you read here.

By: Laura Stoia

Laura Stoia — Tue, 22 Nov 2011 00:51:57 +0000

My son who is 10 years old has recently been diagnosed with Marfans. I am a single mom of two children and our life has been kinda disturbed due to such news. My son, Joey, who has this diagnosis, loves baseball. He is tremendous at what he loves and now after four hard years has quit the potential to be an All Star. I just found this blog on the internet today. doctors say he should not play ball anymore how can this be if Phelps has this and is quit an athlete himself. Do you listen to the doctors or does the athlete enjoy and go along with the sport in which is his life?

By: Leah

Leah — Sat, 17 Sep 2011 06:20:34 +0000

Could you possibly be implying that anyone would TRY to enhance something like Marfan Syndrome to create a better ATHLETE! We held our breath while my brother went through hours of open heart surgery in March and days of complicarions from the surgery. 80% of my family over 3 generations has Marfan and we are religious about annual echo-cardiograms. They keep us alive. More than one athlete has dropped from a dissected aorta. And it is, I think a very much UNdiagnosed disorder, so unless the sports world stops getting getting in a tizzy about 7′ plus basketball players etc. without insisting on the proper testing and diagnoses confirmations before sending these kids out to get hit in the chest on the court etc., more will drop. Why would anyone Want to take that risk? Or set anyone else up to do it?

By: Leah Syverson

Leah Syverson — Sat, 17 Sep 2011 06:00:48 +0000

I am Marfan and I have a long torso, as well as arms and legs, and there was no ‘hunching’ to my back (until after menopause and most of that can be blamed on a neck injury and arthritis). Be careful of the use of the word “usually” as this is true of everyone in my family who has Marfan.

By: Can a person who has Marfan Syndrome grow muscle? | MuscleGrowthResults.Com

Can a person who has Marfan Syndrome grow muscle? | MuscleGrowthResults.Com — Mon, 06 Jun 2011 21:50:18 +0000

[...] Michael Phelps at http://hernaturehisnurture.com/2008/08/16/michael-phelps-and-marfan-syndrome/References : [...]

By: Alex Herring

Alex Herring — Tue, 08 Mar 2011 05:57:22 +0000

As a person with a medical family history of Marfans I have not been diagnosed because I do not want people telling me what I am capable of. My father had Marfan and did not have many of the physical symptoms. My search for this post was started becasue I was looking for athletes that have Marfan. I am so glad there are people out there doing great things with genetic mutations. Everybody has something that is different about them if we start singling them out and not allowing them to succeed that is terrible. How can the way God made you be used to rate your fairness when participating.

By: sue hadfield

sue hadfield — Wed, 03 Nov 2010 01:31:39 +0000

I am a fifty three year old female and since a very early age knew that i was different, the things that i could do with my body was unbelivible and it used to turn family guts upside down, but i thought it was funny. I was always a fantastic swimmer and diver but i had to stop all that when my ears became perferated and my knee joints started to lock the pain was unbearable.
It was only in my mid twenties that i was finding it hard to breath and the cosultants found out that i had a leaking mitral valve.
They put this down to having scarlet fever at an early age so i went with their diognosis.
Now my son who is six foot four keeps having collapsed lungs is waiting to hear from the doctors if he has marfans , i know that he has, i have worked in nursing most of my life and i find the local G.P.s have little idea of this condition in fact my dentist seems more aware of it than they do. I know it seems silly but i am scared for my son because men do not listen and pass these things off as trivial but deep down i know he has this syndrome.
The good thing is i know that this is a condition that can be controlled but the bad thing is when are the local G.P.s going to recognise it and stop saying what a grand healthy child you have.
Thankyou all sue hadfield.

By: um

um — Thu, 11 Mar 2010 16:26:20 +0000

I think he might have had symptoms, but people with Marfan syndrome usually have shortened torsos and what looks like a hunched back

By: fred

fred — Sat, 17 Oct 2009 07:47:59 +0000

no way, his body is proportioned due to extreme workouts, its muscle bulk. marfans heart as said would not allow for such performance for one. his body is accentuated with his low riding pants.