My 13 year old daughter has been plagued with health issues since January of 2008 beginning with double pneumonia which has exacerbated her mild asthma into...
Those symptoms sound very similar to a girl who I saw of that mystery diagnosis show. Some of the symptoms sound like she could have primary pulmonary...
JD: There are several connective tissue disorders that are very similar and yet have a few distinctions, the other two that are much like Marfan's are: Ehler...
I said quick in the title of this post and am trying to stick to that. My name is Jaime. My husband Bill was diagnosed with Marfan Syndrome when he was 4...
God Bless! There is so much that can be done and I am sure there will be an answer soon. Dr. Dietz John Hopkins as you probably know is the best. Marfans Forum...
You will be in very good hands at John Hopkins. Yes, Dr Dietz is wonderful! Also, 30 has been a marker for some people with Marfans (it was for me). The...
Hi Jaime, I was diagnosed at 2. At 4 I wouldn't have known what they were talking about if they tried to explain it to me. All I wanted to do was...
National Marfan Foundation Do you have Sirius Radio? If so, then tune in to channel 114, Doctor Radio, on Thursday morning, June 5, from 7:30 - 8 am Eastern...
Boo-Hoo- Sad to say I just found out my family will not be able to attend the conference this year.We were really looking forward to it, I guess we will have...
I have been awarded the scholarship, and 1 night at the motel. If I can find someone in the same boat as I am, we can each use our reward of the single night,...
Hey everyone! I remember seeing a post WAY back where someone was advertising custom made Marfan Syndrome medical alert bracelets and I've lost the website, ...
Ok everyone, after ALOT of searching and researching I finally found what I was looking for. These bracelets are pretty much (in my opinion) geared towards...
Ok,,, another post sorry guys the whole URL did not go to hyperlink so you'll have to copy/paste it into your browser. Sorry again for the third post of the...
Ok Ok I promise this is the last post..... I tried to copy/paste that link and it still didn't work so if you go to http://www.laurenshope.com and type in the...
Thank you Keli-I was actually thinking about bracelets for my kids for when they go to camp, or are away at a school function. This is very helpful. Tammy...
Keli, thanks for all the effort though! Just in time, too. My son needs a new one. this site has some great designs for boys & men! and the adjustable nylon...
For those going to the Conference, the best prices I have found so far, seem to be on this site http://www.airfarewatchdog.com/ If you have anywhere else I can...
Please pass this on to the hospitals and medical professionals you know..... JULY 10, 2008 1–5 PM The National Marfan Foundation 24th Annual Conference on...
OUCH!!! Looking things over, plane tickets have skyrocketed in price recently. Looking like after covering a part of one nights room, the Conference will cost...
Hello everyone, My name is Leah and this is my first time at using the support group. I'm 27 and have been aware of Marfans all of my life. I have recently ...
I will just quickly give an overview of the doctor appointment. Dallas. He had an EKG which was again abnormal due to a slow heart rate. the doctor does not at...
You can do a basic search of CTD.? Ehler Danlos, Marfan, Loeys Dietz, Hypermobile Joint Disorder and then others are Lupus, Scleroderma, Rheumatoid Arthritis,...
I agreewith you 100%. I have so far found 40 CTDs. it is interesting to me that you mention chronic Fatigue syndrome as I have been diagonsed with that. I...
Last year I asked for and got a copy of my 16 year olds complete medical records, (she went undiagnosed with Crohn's for over five months and the doctors just...
So my 8 year old son with mfs had an apt. at the Shriner's hospital yesterday. It turns out he does not have Scoliosis, Kyphosis, or Lordosis like the doc....
Marsha I would love to send her a card, do you have an adress for the hospital?? Larie iowamarf <iowamarf@...> wrote: Many of you know Velda, one of...
I had a complete spinal fusion, but I was nine at the time. Now I am over 60, and in much better shape than my son who had a harrington rod, because the...
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