Thanks Debbie for your email.Apologise for the lateness of my reply,new to computers so still finding my feet! I am 34,married and have two wonderful kids,aged 7 yrs and 6 yrs. We all live in the Northwest of England near Manchester.I fit the perfect profile of the average Marfan man, 6 ft 3',slim,long limbs,etc etc.I have known about my condition for about 20 years, after suffering a spontaneous pnuemathorax at 19.Initial shock soon subsided and I carried on my life as before, bingeing,smoking,partying and doing everything to excess.Now that I have stopped that lifestyle, I look back and think I was in denial about having an illness.Walked out from another job last Thursday,confused and scared with life.I despair for my family as I cannot give them the level of support as I should.Mentally I am shot to pieces after suffering physical and psychological abuse as a child.Physically I am weak,a bag of bones weighing 70 kg and over 6 foot tall,my lungs battered with over twenty years of smoking cigarettes,pot and much worse.What do I do?Am I being a hypochondriac?

Debbie Clark <dclark150@...> wrote:

You are in the right place for the help and fellowship that people who are affected by Marfans, either as having it, being a parent, spouse or caregiver, to come for a wealth of information.  I think we have all been overwhelmed when we hear that someone we love and care for has something wrong with them that is hard to understand and fathom!  Marfans has so many different manifestations that do or don't show up in each person who has Marfans!  One of my best sorces of information was the information book that I received from the MFS.  It broke down into lay terms the things that the doctors were trying to tell us that they didn't even understand!  

Back in 1976, when we first became aware of Marfans, there was very little information about it.  Even today there are a lot of physicians who know very little if anything about this condition.  We have become a lot of doctors teachers on this subject. 

Depending on where you are in the world there are several medical centers where you can go to that are very familiar with Marfans.  Let us know where you are and maybe we can point you in the right direction, if not we (everyone in this group) will listen to your thoughts and feelings and try to give you the tools to deal with what is going on.

Please feel free to contact me anytime, I am the mother of 2 children (adults now) with Marfans, a wife of 1 and the aunt and sister-in-law of several more!

Debbie C.

dclark150@sbcglobal.net

Krista Orozco <koma028@yahoo.com> wrote:

Well, where do I begin? I am new to all of this and
although somewhat of a diagnosis, but not really, was
made in March, it is only know that denial has taken a
background to the need for knowledge and support. I
apologize if the post is long but perhaps three months
of ignoring the situation has caused an eruption
tonight.

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