Added September 27, 2001
Tia Fairbrother, age 28, North Vancouver, BC
I was about 5 years old when I was disagnosed. My first eye doctor recognized my symptons and informed my parents. My family doctor then started researching and sent me to the first of about 3 specialist throughout my life. The main specialist, Dr. Judith Hall of BC Children's Hospital, was FABULOUS. She tought me and my family all that was involved. I was one of the first Marfan's patients to use hormone therapy treatment (millions of pills for about 4 or 5 years) and I am now a wonderful 5 ft 10 inches tall. My heart is healthy and I do not need Beta Blockers (thank God). I have regular check ups with my heart specialist as well, Dr. Patterson, St. Pauls, Vancouver.
My eyes are my weak spot. I have two lazy eyes, and two semi-detached lenses. I have just been to another eye specialist who has qualified me for transplant surgery. My question for anyone and everyone is: Has anyone had this proceedure and can give me some advise? Thank you.
fairbrother@nscu.com
Added January 31, 1999
Loraine Falter, Tucson, AZ
Am so glad to find this site! Before I give you my background, I have a specific question, and I'd appreciate hearing from as many of you as wants to respond. I've recently been diagnosed with Ankylosing Spondylitis, a serious form of spinal arthritis in which the bones fuse. Here's my question does any one else who has Marfan's also have AS? Do any of you know if they are completely independent problems or if having Marfans' to begin with makes us more prone, somehow?
I know scoliosis is one of the major characteristics of Marfans', but wonder if any one else has low back scoliosis and not upper, which is more common? And does having scoliosis in and of itself have anything to do with this particular kind of Arthritis? And if any of you have low back scoliosis do you also have limited hip mobility?
Now for my background I'm in my mid-50's and while I've known for years that there was something wrong (myopia/astigmatism, scoliosis, enlarged aorta, MVP, double jointedness, benign tumors, long feet, hammer toes, and highly arched palate w/ speech problems), we never really figured it out until 12 yrs ago. In my case I may well have gotten a double whammy. In fact my mom and four of her six sibs. all have symptoms, and one of my cousin's on her side died instantly when her aorta ruptured at home--she was only in her 40's. There's also a VERY good likelihood that my Dad had it as well as his Mom--they both were VERY tall, very thin and Dad was doublejointed to the extreme. Am so glad I've found this site--keep up the good work. And thanks to all of you who take the time to read this and respond.
Warm and Healthy Wishes, Loraine
Added February 4, 1998
Tammy Feick, Kaiserslautern, Germany
Hi, I am 31 years old and was recently diagnosed with Marfan's. I would like to share my knowledge and experinences with Marfan's with anyone who is interested. I am in the beginning stages of it and have already had some significant problems,hernia's, etc. Please share your experiences with me. I would like to find out all I can about Marfan's. There is no family history documented about Marfan's for me. I would like to be able to know how I can deal with this illness in my life.
Added October 8, 2001
Jeremy Fenimore, East Northport, New York, USA
Hi, I am the Mother of a 24 yr old young man, who I believe has Marfan's. I am in the process of setting up appt's with various doctor's, re: Ortho Dr., Rheum Dr., and hopefully soon will find out if my Son has Marfan's. I have always thought while he was growing up that he had two different bodies. So far I have had his heart checked and his aorta is fine for now, although, he does have MVP. I would love to hear from anyone in reference to finding a good dr. and a penpal for my son. Thx and GB all
ary47@aol.com
Added June 11, 2000
Lani Fisher, Adelaide
Hi my name's lani, & i'am from Australia & i have got marfan's syndrome, i'am 17 & i was born on november the 4th, 82, i'am an aboriginal & i was born in northern territory, alice springs, - yuendimu, i'd like to say that my real family like my mum & my auntie & my big sister have all got marfan syndrome, my mum who's name was becky died from a heart failure. she was 29 she died in 1995,it was either june or july i can't remember, then after a year or so my auntie died she had a heart problem too i had to go to the funeral which i dont like funeral's sorry to say, i miss my mum the most cause she has been an inspireration to me -), so it leave's me & my sister mary - anne, my big sister live's in yuendimu she's 18 a one year older than me, we both take heart tablet's called Norfen i think ????, when i was younger i was sent down to the Adelaide's childrens hostipital in south australia i live there now & i was sick then after i was adopted by a nice white family i still live with my foster mum & grandma & my little sister who is disabled, I'd like to know if anyone also has marfan's syndrome & heart desease too i've got it, so i'd like to make a pen-pal either male or female, i don't cause were you are from Australia or overseas i dont mind how old you are, -),
My Email Is
Added April 10 2000
Vicky Fleck, Arkansas, USA
I have a neighbor who was diagnosed with marfans about 4 years ago and have been surfing the net to find information for her. She is interested in talking to other people who have marfans and live in Arkansas. She feels alone because so very few people have ever heard of this disease and would like to know if there is a support group in this state. Please feel free to email her at my address and I will see she gets the message...put marfans in the subject box and I will know it is for her. Thanks
Added February 7, 1998
Lee Forrest, England
My name is Lee and I am 17. I live in a little village called Furness Vale in Derbyshire. It is south of Manchester. I love to play basket ball, I also like Formula 1 and watching Star Trek. It has been a couple of years since I had marfan. I have never really been bothered about having this condition but I would like to talk to people who are the same as me about it. My consultent told me that it would be good for me. What I would like to know is how it has affected others. I can not get on the E-mail () that much so if you want to you can write to me, my address is-
Lee Forrest
98 Buxton Rd
Furness vale
High Peak SK23 7PF
Please if someone can reply to me.
Added September 2, 2001
Bobbie Foust, Newark, Delaware
Hi!I'm 38 years old with 2 girls ages 13 and 10. I have been diagnosed with Marfans since the age of 7. I haven't known what Marfans consisted of. My father who is still living and 72 years old,his sister and their father had it. I am not sure of farther back. I just joined the support group here in delaware. Anyone wishing to talk just e-mail me.
Updated 29 September 1999
Hello, We are Carol and Roland Furber.
We have five children, one of whom is Victoria.
Vicki has Marfan syndrome and she is seventeen years old. Vicki has been learning to play the electronic organ for 7 years and has succeeded in attaining her first level music college exam. She is a lovely girl and we love her dearly. Please get in touch as we would love to hear from anybody linked with Marfan.
Vicki, Carol and Roland