So, Carol would not have been in YOUR support group. Carol's brothers and their offspring do not seem to have inherited the problem. Carol never had children, so she did not pass down the gene. She is unusal in that she has good heart valves, just some hyperflexibility and a propensity for aneurysms. As I said, now she seems susceptable to getting mini-strokes as well.
No, Carol grew up in Albany and she has a brother still living up there. Her maiden name is italian and starts with the letter A. (Not sure I should include her family name on the forum.) What happened to her did not happen until she was about 40, married and living in the Washington, DC area (where I live). Her father had died unexpectedly of an aortic aneurysm when he was around 40. The doctors at that time were puzzled, but since Carol's father was a chemist they concluded he had been exposed to some chemical which caused the aneurysm. After Carol went into dissection (still undiagnosed) a friend of Carol's (an RN) told her doctors that Carol's father had died of an aortic aneurysm and pointed out that Carol's pulse was different in her two arms. Tests were then done, followed by Aortic surgery. Carol had to go back several years later to have the rest of her aorta replaced because the original dissection had damaged the whole aorta.
Hi! Not much time to write today but thanks for the good memories of JH now and back in the day. I will not be able to go to the NMF conference this year, but would love if you could report back about it! If we could get it back in Baltimore (how selfish I am!) I could get my NMF friend, Carol, to come. She's the one from Albany.
Hi again, Barb! I forgot to look up where you live, but if Baltimore is at all close, then I would recommend Hopkins and Duke Cameron. I also have forgotten how old your son is, but pediatric surgery is among Duke Cameron's specialities. He also will take on the extremely elderly who have been rejected by other surgeons. As you may recall, Johns Hopkins was founded over 100 years ago and is a hodge podge of buildings connected with bridges and passageways. One fellow on VR was a bit put off because Dr. Cameron's office is a tiny thing (as many of the offices are in Hopkins) in one of the old buildings. But the care is top notch! I guess I lucked out because I ended up my week in the hospital in a large room with an excellent view of the amazing Hopkins dome--probably in the original building of Johns Hopkins. I loved watching the sun (it was December) rise and set through the dome columns.
3. A good Marfan-like friend of mine, Carol, comes from the Albany area. Her father had died of a mysterious aortic aneurysm. Carol also had a surprise dissection in her early 40s and almost died. (Her father's situation had officially been attributed to his work with chemicals.--WRONG!)
I am also on the NMF web-blog, but rarely get much messages from that group. BTW, Dr. Liang at Stanford was the first doctor to find I had a bicuspid aortic valve. I had seen Dr. Dietz several times over the years and not even he figured out my true "problem". I had my AVR at Hopkins from Dr. Duke Cameron. He removed some of the restrictions I had lived with for decades: I now supposedly can lift 60 pounds instead of my old limit of 20-25 pounds. I cannot imagine I could even lift 60 pounds at this point, so think I will still keep to the old 25 pound guidelines.
I went to 2 or 3 NMF annual conferences when they ALL were in nearby Baltimore. By the time the conrferences were moved, I had tired of holding together a small, but loyal group, so ended my groups. One of my small loyal followers took up the leadership and led meetings for another few years. Finally, we all wore out, plus NMF imposed some strict regulations for groups and demanded a lot of money-making. Today a new set of true Marfan people have begun events and just set up a Chapter that includes several states surrounding the DC area, which increases the odds of having a good size membership. Also, the new set of Marfan leaders are good with fund-raising. tbc
I was first (mistakenly) diagnosed with Marfan Syndrome in 1990 because I had a Marfan-type jaw/pallate (sp?), long thin fingers, double-jointed qualities, and a verified aortic aneurysm in my ascending aorta. I (re-)started the Marfan support group in the Washington, DC, area at that time and it was fun and educational. We got a lot of the big-time people from Hopkins come over to talk to our group (including Hal Dietz). Before the imposition of strict phone-counselling rules, I answered a lot of questions from people via telephone. That was very satisfying to me. To be continued...