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marfans_support_and_c...
Jun 5, 2005 11:43 am
2010
Jessica is having her eyes checked for surgery on Thursday this week, if they want the surgery; then we will also be seeing cardiology that day to see if they...
Sorry all I have missed the chats since right before Jessica's heart surgery. I do miss you all, but I have been busy caring for sick family members. This week...
Hi Connie, Sorry to hear you have sick family members- make sure to take time for yourself as well. How has Jessica been? Is the strep related to any drugs...
Jessica was out in the sun a day before she got sick and I think over did it as she got badly burned and was completely wiped out. I really think that is why...
I am so pleased to find this group. It has been a while since I have used a group so my etiquette (sp.?) may be dusty. I am 49 years old and have Marfans. I...
Hi Lee, This group is great. My son was diagnosed last fall and is a new mutation, so im struggeling with helping him when I cant realate to waht he is going...
Hello Lee, Welcome to the group! You sound like an extrordinary guy and are very blessed to have a wife stand by your side throughout all the medical...
Lee, Welcome to the group. I am Debbie and I am married to a Marfans. Tony(my husband) has an extensive family involvement in Marfans and I am sure you will...
Welcome to the group Lee! This is Jon Rodis and I am from Boston. I am very active in spreading Marfan awareness and am very driven to one day in our...
Hi, When I ws in my teens I use to worry about it and attracting boys. It was horrible. I talked to the people at AI Dupont and since my chest in flatter on...
Larie, We live in Oklahoma so I think we too far away. Would be nice to visit sometime though. How old is you son? If he is old enough, my girls might send him...
Hi Lee, Thanks , but he is going to be 5 on the 22nd. He isnt reading yet. He is so bright if it wernt for his very bad eye sight he would probably be learning...
Larie, How bad is his vision? Can he see light and dark? Can he recognize your body or your face? How long have you been aware that he had trouble seeing?...
The Dr.s tell me that his vision is very bad in his right eye, all destorted because his lense has sliped up and over enough that he is looking through the...
hey ya larie meghan went to the eye doctor in utah and she will have the lens surgery she is legally blind in one eye and almost in the other they will do the...
I have just recently been told that I fit the Marfan' Syndrome group. I was originally diagnosed by my internal medicine doctor that I have fibromyalgia....
Larie, I had the lenses in both eyes removed when I was 25 and I thought I saw normally. After the surgery someone had to be with me 24 hours a day as I...
I have another question for you. Wyatt is getting taller and taller and longer and longer, but he is not gaining weight. He is starting to look like a...
Im so glad you can see better now. I am taking some time off of work because we have no I dea what to expect after they procedure. Kids usually adapt quickly...
Larie, You can try those things, but from experience with my two children as well as my niece and nephew, it really didn't work! Just be prepared to have to...
... Lol, Ya, wranglers fit my son the best, but the funny thing is that his hip bones are so wide that the slim fits are to small in the wast. His bone...
Hi: This is Jon Rodis and I have Marfans and Fibromyalgia. I can definitely relate and help you with having both. The fatigue and pain that is a product of...
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