Marfan Syndrome Support Group

I'm a 38 year old female with , yes Marfan's. I was diagnosed back when I was 15. I have been through a partial lobectomy and aortic root replacement and two mechanical valve replacements. As I get older I am noticing my joints aching and being more tired. Has anyone heard any new news for us adults and what we may be looking at as we age with this disease?

Hi

I don't suppose this is an easy question to answer. Everyone ages differently, even those without underlyng health problems. As you well know fatigue and joint pain is an integral part of Marfan I haven't heard of any 'new' news but it is really just a case of tryng to listen to your body and rest where possible when you need to. I don't know if you are taking any medication for your joints, it may be worth discussing this with your GP.

Hope that helps a little

Polly

Thanks POlly! My current meds don't include anything for joint pains. I have been thinking about discussing it with my doctor. I guess I am tired of being tired and having aches in my joints. I have done yoga and physical therapy, both seemed to work for a time and then money wasn't available to continue. How true it is that we all age differently. Thanks again!

Good idea to go along and have a chat with your doctor. If you are not keen on being on medication long term sometimes you can benefit from a boost of medication. Relentless pain can effect tiredness too, it's like a vicious circle

I really know what your talking about. I have Loeys-Dietz, it has some symptoms Marfans and Ehlers-Danlos.I have mitral valve prolapses also an enlarge aorta, no surgery for that just beta blocker. Had two bleeds one in the brain and the other in abdomen. My joints are getting worst as I get older, and an scary rate. My joints dislocate all the time, I ache more as I get older. In fact this last year has been rough. That sounds dark doesn't it. I still around most LD people live tell there 30's I am 57 so there is hope and I not planing to go anytime. Em

Emilie55-

Wow! I guess you really do know how I am feeling. Sorry that you go thru it much more than I do. But it is good to know we aren't alone. Huh? Not familiar with the conditions you have. I am glad that you are still around. I am grateful to have met you and hopefully can call you my friend.

The anuerysm is scary. I too am on beta blockers but have had the surgery. All that is going great--Thanks to God. I think the joints aches are from not have the proper collagen in my joints due to Marfans. You have shown me that it is possible to get thru all this. Thanks!

Erica

I have felt alone for a long time, because this is a rare (11,000 known cases that is a very small number in the world) disorder there are times even some doctors do not know what to do. Was lucky to live in DC area, Johns Hopkins has a genetic department and Dr.Hal Dietz the person that found the mutant gene and is named after works at Johns Hopkins. People from all over the world try to see him, it very hard to get passed the screening to see him. I think my guarding angle was working over time helping me to get in to see Dr. Dietz 410-614-0701. If you phone he will phone he will phone back and talk to you he also knows a lot about Marfans.

Hi Emilie

My friend has just recently had her diagnosis changed from Marfan to Loeys Dietz. She lives in Ireland and has also been lucky to be in touch with Dr Dietz who has helped her.

It's amazing sometimes when you think you are on your own with an illness then you come across forums like this that will help you.

Take good care

Polly

Holy,Cow! What a very small, small world. I almost drop all my teeth out (Joking). Your friend in Ireland is the first person I know of that has Loeys Dietz....I am not a lone! She being helped my Dr, Dietz I have an appointment in Dec with Dr.Dietz.....Thanks for telling me I am not the only one....God Bless, think happy thoughts and may you have a pain free day. Em and her furry gang...meow!

Hope you are over the shock Have sent you a PM