In that case I'll join in next week. I have some concerns about my Marf niece who will be undergoing surgery for scoliosis in May. I feel so ignorant - but...
Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal marfan chat time Wednesday February 4, 2009 ...
marfans_support_and_c...
Feb 4, 2009 12:55 pm
6267
Fish oil is good for everyone and everyone should take it if you aren't eating lots of salmon or other things that have what fish oil has in it, omega 3. ...
Sheri, Thank you for your response, I understand the rollercoaster your on and truly hope all turns out well for you and your son. My reason for searching...
Hi LeNora, I don't know if it will help or not, but we are being diagnosed at University of Chicago's Marfan Clinic. You might want to call over there and see...
Hi everyone, I am having a special sale in my Etsy shop in honor of National Marfan Awareness Month. www.lariescreations.etsy.com Please check it out and tell...
LeNora, I can relate to what you are going through and I live in Newport News, VA. I have been searching for a doctor in my local area to help with Dural...
EDS-IV or vascular and LD are very similar. I have children with LD and their geneticist said in fact that their's is very similar to this. When I...
Okay so my son has a Dark Circular red spot on the back of the retina that has gotten larger and so they are sending us to get some pictures and other tests...
I'm afraid I don't have a specific purpose in joining this group. I was diagnosed with Marfans at the age of 10 (I am now 22). My older sister passed away...
Hi Laura, Thanks so much for writing! It's amazing how helpful it is to hear other people's stories and to know you are not alone. We are new to Marfan, etc....
I am wondering about peoples experience with fatigue. Is there an association between MFS and fatigue? I have done some reading that made allusions to...
I definitely experience fatigue and exercise-induced asthma. After I had the pectus surgery it really helped. I breathe much easier now, but still get very...
Good luck with your diagnosis. Being able to know what's wrong is always a relief for me. Once I know the problem I can gather information and begin to...
I have always felt Marfans causes fatigue. I am normally a very tired person for my entire life. I love my sleep. I've gone to the doctors and they tell me...
I do not know about fatigue, but my 8 year old son has much less stamina than his peers. When they are playing a sport or racing he wears out much faster thatn...
I believe I have read about deminished lung capacity in Marfan's patients. It seems to be a common thread. I was one of the most athletic kids in my...
... Hi guys- i have never posted a message befor, but I am looking for a "pen pal" for my 11 yr old daughter Maya who has Marfans. I also would love to talk...
Hey Sheri- I am in Texas. My 11 year old son said he would be a pen pal with your daughter, but he doesn't have an email yet. I don't mind him using mine. His...
Tammy, Actually, it was Sheonon's daughter that was looking for a pen pal but I have a 10 year old son who is awaiting test results. He does have an aortic...
To best answer your question, we would need to know what medications you are on. I was on Atenelol for a while, and I couldnt walk across the street to get...
Sheri et al. We have a couple moms with about 10 year old boys who come to chat. Sometimes the boys talk with each other also. (Sorry I don't have a good...
Hi Laura, It sounds as if you have gone through a bit and are a very strong lady. I am sorry about the loss of your sister. I wish you good health and...
Hey everyone, this is the last week of my sale in honor of National Marfans Awareness Month. I have added some new items, and hope you will stop by and check...
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