Gaining Weight with Marfan Syndrome

nashipants · February 2014

Hey everyone! I'm new here, have some disordered eating habits (but not an eating disorder) and I'm in the process of trying to gain back the weight I lost during a recent series of traumatic events.

However, the biggest concern I have is that I'm one of the "lucky" few who has a condition called Marfan('s) Syndrome, which is a genetic disorder that effects connective tissue. Along with a whole host of other problems, this means it's extremely difficult for me to build muscle and almost as difficult to gain any weight at all--and if I do gain it, it will basically "fall off" if I miss a single meal. Unfortunately, that host of other problems means I'm sick a great deal, so I end up missing a lot of meals.

I'm working through that and trying to change my habits, and a friend of mine suggested using this site to help my track my caloric and nutrient intake and help me get into the habit of eating like a normal person. Thanks to the traumatic events mentioned above, I've been in stress mode for over a month and when I'm in stress mode I literally don't get hungry. This has killed my eating regimen entirely, but even when I wasn't sick and was still getting hungry I probably didn't eat as much as I should have.

Thanks to Marfan's, the projected calories needed for weight gain are going to be dramatically off for me--I don't know that there's anything I can do to account for it, but I'm trying to figure it out. Mostly I'm posting this to see if anyone has any advice on this front, and see if there's anyone else with Marfan's out in the audience (raise your hand!) or a similar issue who can give me some input from their end.

...Also hi! I'm a 28 year old woman, 5'9" (for any Marfan's folks out there who are going to use my height as "proof" that I can't have the condition, I'm Southeast Asian so that is in fact very tall), and currently weigh about 105 pounds. Nice to meet you?

Spooky_Scully · February 2014

Hi!! Welcome to MFP

I have learnt a a little bit about Marfan's in my studies, and I don't envy you - it really sucks! But my suggestions would be:-

Find a good doctor who can work with you through managing your Marfan's. A good doctor will listen to you and be able to help you put in place resources to manage it. I know that you are most likely very frustrated and want some progress, but as this is a serious and chronic disorder, it is important that you are monitored through any lifestyle changes.

Find a physiotherapist or OT. A physio will be able to assist you in developing suitable strengthening exercises which will help you gain muscle whilst keeping in mind the risk physical activity can have on your blood vessels, joints and skeletal system.

Find a nutritionist! MFP is a great tool, but it has its flaws even for those who have no co-morbidities! A nutritionist can advise you on what and how much you should be eating to both manage your Marfan's and help you reach your goals. MFP will, however, be a good little tool to help you keep track of your eating! Plus the community is very supportive

I'm sorry if this isn't quite the answer you were looking for, and I know that sometimes it isn't always convenient (or cheap!) to put these things in place. However, Marfan Syndrome requires a holistic approach for management, and the better managed it is now, the better you are going to feel later in life!

Scully x

Fuzzipeg · February 2014

I have to confess I have not heard of your problem before. You sound to have courage in the way you are trying to deal with all this.

My only thought is for those days when eating properly is too much. I remember when I worked with elderly people who were also diet restricted and needed supplementation there were balanced fortified drinks available here in the UK these are different to the diet drinks. I do not know if something similar may be available where you are.

II wish you well as you try to counter the effects of your condition.

Junctionbox · February 2014

The first time I heard of Marfan Syndrome was on reading the autopsy report on my best friend, who was undiagnosed. So I know a little about it and hope you can manage your condition. I found what looks like a good support forum here http://forum.marfan-forum.org.uk/

MelissaPhippsFeagins · February 2014

I have two friends with Marfan's and one of them her daughter also has it. One of them has found that she has less Marfan's related problems when she follows a gluten free diet and has put on 5-10 pounds since she went GF 6 months ago. She works out with hand weights and resistance bands, nothing heavy but enough to keep the gains as LBM rather than fat. I don't know if that would work for you, but it might be worth a short-term try to see. It's just something she tried out of desperation. (Her worst ligaments are in her feet. My other friend has issues with the connective tissue in her heart and will be having open heart surgery sometime in the next year to wrap her aorta in something to hold it at a close to normal size/pumping volume.) Good luck!

nashipants · March 2014

For the people in the thread unfamiliar with Marfan's, it's genetic, dominant, and effects roughly 1 out of every 5,000 people in the US today--not all of these people are effected the same way, however, which makes it difficult to catch and diagnose properly before things go wrong. I have it, as do three of my siblings, my mother, her twin sister (who passed away from complications of undiagnosed Marfan's late in January), their father, and his father before him. None us were ever diagnosed before now, but we've tracked back their medical records and found that basically every single condition that's ever effected our family falls under the same umbrella.

I have a good doctor, but I'm not in the process of building a proper team just yet because I'm moving to another city three hours away in about four weeks, so getting a team together just before I up and leave would be pretty pointless. Thankfully my PCP has some connections to a cardiac hospital in the city where I'm moving to--she taught in the same network of teaching hospitals for a while--and is familiar enough with the condition to give me a whole list of lifestyle changes to enact when I was diagnosed. (She was also pretty appalled that it hadn't even been approached as a possibility before she transferred into my clinic.) Those changes have made a huge difference--and I'll definitely look into seeing a nutritionist once I'm settled in my new place!

Melissa, your friend with Marfan's must have a fairly minor case (I use the word "minor" loosely, Marfan's is pretty debilitating on a lot of different fronts and patients degrade over time) if she's able to work out with weights and resistance bands. I'm not even supposed to carry my groceries up the stairs to my apartment if I can avoid it because it can cause damage to muscle tissue and tendons. My doctor discussed going gluten free with me, but since I have a limited diet to begin with (I also have oral allergy syndrome, this means I can't eat any raw fruits or vegetables and can't even eat some of them when cooked), we decided it wouldn't be worth the risk. Cutting out all food containing gluten would probably cause my weight to plummet and I'm in pretty bad shape already; losing the wall of fat around my heart would probably kill me, considering my condition. It's a pretty unfortunate catch-22.

Gaining Weight with Marfan Syndrome

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