May 17, 2017

Marfan Syndrome

Here’s a free collection of resources about marfan syndrome- Marfan Syndrome blogs, videos, support groups, first-hand experiences and advice from people who have marfan syndrome, etc.

Jump to:


 

Marfan Syndrome Blogs

Here’s a list of marfan syndrome blogs- blogs written by people with marfan syndrome, or about marfan syndrome.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Marfan Foundation Blog blog.marfan.org 2017
Married to Marfan’s http://marfanwife.blogspot.com/ 2017
The Marfan Diary themarfandiary.weebly.com 2017
Living with Marfan’s Syndrome precypinoy.blogspot.com 2016

 

Marfan Syndrome Support Groups

Marfan Syndrome Support Groups On Facebook

  1. Marfan Syndrome Facebook Group (9845 members)
  2. Marfan Syndrome Forum (3589 members)
  3. Marfan Syndrome UK (1916 members)
  4. Marfan’s Syndrome Group (656 members)
  5. Marfan Syndrome UK Forum (432 members)
  6. Marfan Network Australia (348 members)
  7. Marfan Syndrome Disorder Australia (251 members)
  8. Marfan Syndrome Canada Support Group (190 members)
  9. Texas Marfan Syndrome and Related Disorders Community Group (171 members)
  10. Treat Marfan Syndrome with Love (144 members)

Other Marfan Syndrome Support Groups And Forums

  1. Daily Strength Marfan Syndrome Support Group (11 members, 55 posts)

 

Marfan Syndrome Survey

We’re surveying people about their experiences with marfan syndrome. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Marfan Syndrome**


Marfan Syndrome Symptoms

What symptoms have you experienced?

  • Lenses in eyes shifting up; joint pain; heart slightly enlarged. (Grandma of 9 year old boy)
  • Back pain, lenses dislocation. (Destiny, 21 years old)
  • Lots pain or fatigue are probably my biggest problems. (Megan, 23 years old)
  • Aortic valve dilation, inability to gain weight, SVT, migraines, crowded teeth, scoliosis, irregular heart beat, astigmatism and poor eyesight, high arches in narrow feet and long appendages. (Kayla, 26 years old)
  • Severe short sightedness, anaemia, tiredness, migraine. (Ruth M., 33 years old)
  • Lung collapse. Fatigue. Tall. Heart issues. (Canyon E., 34 years old)
  • Scoliosis, Kyphosis, flat feet, aneurysm in the aortic root. (Daniel L., 38 years old)
  • Severe scoliosis, enlarged heart, enlarged aorta, very tall, mortal valve prolapse. (Geoff, 42 years old)
  • Aortic aneurysm, dural ectasia, eye issues, cardiomyopathy. (Jennifer, 43 years old)
  • PAIN PAIN AND MORE PAIN!!! BSD JOINTS FAST HEART BEAT, MITRO VALR PROLAPSE, ARTHRITIS EVERY WHERE, GETTING SICK EASIER, TEETH ISSUES, ANXIETY, DEPRESSION AND OH DID I MENTION PAIN?!!! SLOWLY BEING ABLE TO DO LESS AND LESS, AND BEING SO TIRED ALL THE TIME. (Cari D., 49 years old)
  • Craniostenosis. Scoliosis. Lens dislocation. High arch palate. Atnoldd chiari malformation. Dural ectasia. Aortic valve rupture/dissection. Osteopenia. Pectus caranitum. (Sharon, 51 years old)
  • Ascending Aortic aneurysm with aortic valve repair, sublexed lens, pectus C., scoliosis, fibromyalgia, depression, CFS, cluster migraines, DE/Tarlov cysts, cholesteatoma rt ear (youth), interstitial cystitis, IBS, severe muscle/joint pain, costochrondritis, multiple female issues with TAH&O… (Gail, 56 years old)

Marfan Syndrome Facts

What are some interesting facts you’ve learned about Marfan Syndrome?

  • There are several famous people who have Marfan Syndrome. (Grandma of 9 year old boy)
  • Every thing I have learned is interesting. (Destiny, 21 years old)
  • You don’t have to be tall to have it. We all look different in our own beautiful ways! (Megan, 23 years old)
  • You can use genetic testing to determine if your baby has Marfans, in vitro. A blood test prior to pregnancy can test the fbn1 gene for mutation to confirm Marfans, and then in vitro does the same to see if mutated genes have been passed on. (Kayla, 26 years old)
  • That Abraham Lincoln had Marfan’s, and they suspect Tutankhamen had it too! (Ruth M., 33 years old)
  • It sucks :-/. (Canyon E., 34 years old)
  • That the symptoms vary much from person to person. (Daniel L, 38 years old)
  • Not everyone is the same. (Sharon, 51 years old)
  • That you don’t need to be “tall” to have this disease. How connective tissues are everywhere in your body- thus it may, and often does, affect your total body. Living with this disease affects us both mentally & physically. (Gail, 56 years old)

Marfan Syndrome Pain Management

What are effective ways to manage your pain (if applicable)?

  • Curcumin. (Grandma of 9 year old boy)
  • Ibuprofen. (Destiny, 21 years old)
  • I’m really scared to get addicted to pain medication, so I usually won’t take it unless the pain in really bad. I just try to ignore it, and occupy myself with something else. (Megan, 23 years old)
  • Tylenol, icy hot with lidocaine, ibuprofen, Aleve, stretching and heat. A good foot massage helps too. (Kayla, 26 years old)
  • Not applicable. (Ruth M., 33 years old)
  • Meditation. (Canyon E., 34 years old)
  • Meditation, psychotherapy. (Daniel L, 38 years old)
  • Regular stretching, practicing Tai Chi, eating a low refined sugar diet to minimize inflammation. (Geoff, 42 years old)
  • Doctors don’t know much about it. (Cari D., 49 years old)
  • Heat packs. TENS machine. Pain meds. Physiotherapy. (Sharon, 51 years old)
  • Keep moving, gentle exercise and stretching. Bike riding helps my hip pain. Prayer. Music. Laughter…lots of laughter…it’s amazing actually, the benefits of laughing over a show or with friends. (Gail, 56 years old)

Marfan Syndrome Difficulties

What are the hardest aspects of living with Marfan Syndrome?

  • No contact sports. (Grandma of 9 year old boy)
  • Certain things I can’t do. (Destiny, 21 years old)
  • Probably that I look ok, just tall, so people struggle to understand when I say I’m disabled. (Megan, 23 years old)
  • 1. Having to explain the disease to people because they think I’m not healthy looking weight wise. 2. The absolute hardest thing to deal with is being told I can’t do something. I can do anything I want to. Not every task is accomplished the same way by everyone. Loved ones fear typically results in a negative outcome. 3. The hardships of wanting to be a mother and bearing a child. I worry I will never get the chance to be a mother. (Kayla, 26 years old)
  • For me, looking different. I struggle with self esteem and body image. (Ruth M., 33 years old)
  • Having to say “no” to things due to the health issues it could cause. Including good paying jobs. (Canyon E., 34 years old)
  • Having developed a distorted, conflicted self-image. Having had heart surgery. (Daniel L., 38 years old)
  • The threat of pain in the chest being a heart issue. (Geoff, 42 years old)
  • Exercise limitations. (Jennifer, 43 years old)
  • THE CONSENT PAIN! I USED TO BE ABLE TO DO ANYTHING AND NOW IT’S LESS AND LESS!! THE WORRY EVERY TIME I HAVE A CHEST PAIN. KNOWING THAT I PASSED IT ON TO TWO OUT OF THREE OF MY BOYS. WATCHING THEM HAVING TO DEAL WITH THE PAIN, AND HAVING DOCTORS THAT DON’T UNDERSTAND . (Cari D., 49 years old)
  • The pain on a daily basis, and not knowing how each day will be. (Sharon, 51 years old)
  • Every day it seems like something new to deal with. Limited mobility and lack of ability to do the things you used to love…or just be able to do for yourself. Pain and fatigue. Depression. (Gail, 56 years old)

Marfan Syndrome Advice

What words of encouragement/advice can you share with others who experience Marfan Syndrome?

  • My grandson says, when someone comments on his height and his being a basketball player, “Not a basketball player. We’re book people, not ball people.” (Grandma of 9 year old boy)
  • Just because you have to carry it with you doesn’t mean you have to let it stop you. (Destiny, 21 years old)
  • No matter what people say or do, you do matter, and we are all beautiful in our own ways! (Megan, 23 years old)
  • Set realistic limits for yourself, and never be afraid to live a full life. Don’t be afraid of exercise or physical activity. And above all, don’t forget to enjoy some quality alone time! (Kayla, 26 years old)
  • Look for the perks – little things such as being able to put a superking duvet cover on with no help because of our long arms! It makes you smile a little, and be proud of your difference. (Ruth M., 33 years old)
  • I had a spiritual awakening before going into surgery to help me cope with what I’m experiencing. I encourage others to follow a spiritual path to living life. I had relied on drugs and alcohol before to cope. I am sober now and being thankful for what is available to me now. (Daniel L., 38 years old)
  • It depends on how they are affected. (Geoff, 42 years old)
  • There’s always someone with worse symptoms than you, stay positive, and carry on. (Jennifer, 43 years old)
  • Don’t give up!!! (Cari D., 49 years old)
  • Research as much as possible. Educate others from doctors to friends. (Sharon, 51 years old)
  • Find something that gives you joy and hope. Faith, self care. ..be kind to yourself. Educate those around you so they understand your limitations. If you don’t get good care…move on. (Gail, 56 years old)

Marfan Syndrome Diet and Exercise

What’s been your experience with diet and exercise?

  • He limits his caffeine intake. (Grandma of 9 year old boy)
  • Difficult. (Destiny, 21 years old)
  • I’m not allowed to exercise because my heart rate rises too much even on beta blockers, so I can’t say anything about that. But regarding the diet, I tried a high calorie diet a couple of months ago, and put on half a stone in 7 days! Unfortunately due to not working, and money being tight, because I’m disabled I wasn’t able to keep it up. (Megan, 23 years old)
  • I eat anything and everything. I have tried to put on weight by means of increasing carbs and protein, even drinking ensure between meals, without really putting on significant weight. As far as exercise goes, I have worked on increasing my muscle mass by lifting small weights and using equipment at the gym. I do not do cardio. I walk at work all day, and don’t need to burn calories. My cardiologist has said not to lift more than my own body weight. Exercise helps me physically and mentally. (Kayla, 26 years old)
  • I struggle to do exercise as I end up exhausted and with a migraine the next day. Gentle exercise only. I struggle to put weight on and have a high metabolism. (Ruth M., 33 years old)
  • Try to eat healthy, it will only help in the long run. (Canyon E., 34 years old)
  • Its been a challenge to do this. I still hope to obtain my weight goals and work on obtaining a stronger body. (Daniel L., 38 years old)
  • Keeping moving is vital. Diet helps keep the proper mineral and vitamin balance, which can help minimize symptoms. (Geoff, 42 years old)
  • I exercise as much as I can tolerate, and try to eat healthy. (Jennifer, 43 years old)
  • I USED TO BE SUPER ACTIVE AND SUPER FIT. NOW IT’S HARD TO EVEN WALK, LET ALONE EXERCISE. (Cari D., 49 years old)
  • Exercise is painful, but need to for strengthening exercises. Diet doesn’t affect me. I eat, but don’t put on weight. (Sharon, 51 years old)
  • I’ve recently had to go Gluten free…my GI system thanks me. I’m not a fanatic on health food…but I try to eat healthy. I’m on blood thinners…so I eat a consistent diet and still have the occ glass of wine. I do take vitamin supplements. (Magnesium, lutein, biotin, soy, D3 and get B12 shots). (Gail, 56 years old)

Marfan Syndrome Treatments

What’s been your experience with treatments (medication, surgery, etc.)?

  • No surgeries yet; he’s been evaluated for lens replacement in the future. (Grandma of 9 year old boy)
  • I’ve had three surgeries- all uncomfortable, but well worth it. (Destiny, 21 years old)
  • I haven’t had any surgery because of Marfan syndrome yet, but regarding beta blockers- find the one that works for you! (Megan, 23 years old)
  • I take atenalol daily to regulate my heart rate which has mostly eliminated SVT. I’ve been on it since two years of age. I also take warfarin to prevent blood clots in my prosthetic aortic valve. In 2004 at the age of 13 I had spinal fusion for scoliosis and six months after I had my aortic root, stem, and valve replaced with a St. Jude’s valve. (Kayla, 26 years old)
  • I’ve not needed surgery and am on a low dose beta blocker. I was looked after with great care during my pregnancy, and they did everything to allow me to have a natural birth without putting pressure on my heart. It was an incredibly positive experience. (Ruth M., 33 years old)
  • Doctors aren’t always right. You gotta know yourself, and stand up for yourself. (Canyon E., 34 years old)
  • It was a bit of downer having to use a back brace while in high school, although I am thankful now that I had access to that treatment. It was a scary experience to go through the aortic root surgery I had…but I am proud of having experienced it. (Daniel L., 38 years old)
  • I have had three heart surgeries, and am on Warfarin. (Geoff, 42 years old)
  • I’ve been on meds since I was diagnosed at 12, beta blockers etc. (Jennifer, 43 years old)
  • A SURGERY WAS GOOD, BEFORE THAT I WAS BLIND. MEDICATION DOCTORS DON’T KNOW WHAT TO GIVE ME TO HELP. (Cari D., 49 years old)
  • I have all good doctors who understand me and marfans. (Sharon, 51 years old)
  • I’ve had a pretty positive experience actually. Except for the new spine issues (DE/Tarlov cysts). I was diagnosed at a young age, but my parents didn’t receive any education, so I participated in sports. I carried a successful pregnancy when my aorta was 4.8cm (whew!). Open heart repair at age 34 in 1995, went very well…and was performed bloodless. I find the minutia of Marfans not to be as easily addressed. Living with the impact, and slow digression of our bodies…without clear medical support and the serious need for easier options, ie. attaining disability. (Gail, 56 years old)

Marfan Syndrome Recommendations

Anything you’d recommend for someone with Marfan Syndrome?

  • Know your own body, and live as fully as you can. (Grandma of 9 year old boy)
  • Read, and get involved with anything and everything that has to deal with this Genetic disease.. (Destiny, 21 years old)
  • If your struggling with Marfan syndrome and everything that comes along with it, speak to somebody about it. I’ve got a psychologist and she’s the best! (Megan, 23 years old)
  • Know the risks, stay active, keep up with medications and do yearly check ups, and don’t be afraid to ask your doctor’s questions. (Kayla, 26 years old)
  • Join support groups either online or in person. Talking with others is SO important. And always get a second opinion. Unfortunately there are not enough Marfan’s specialists out there, and there’s plenty of bad advice. (Ruth M., 33 years old)
  • Live life to the fullest. Don’t let this define you. (Canyon E., 34 years old)
  • If you have dealt with issues of body image like I have, find a therapist to help. And also connecting the Facebook support groups has been good for me. (Daniel L., 38 years old)
  • Be calm. Take care of yourself. Ask for help when you need it. (Geoff, 42 years old)
  • TO RESEARCH IT THEMSELVES. THAT WAY WHEN THEY GO TO THE DOCTORS THEY CAN EXPLAIN IT TO THEM. LEARN AS MUCH AS YOU CAN ABOUT MARFAN SYNDROME, SO YOU WILL KNOW IF YOUR DOCTOR IS TREATING YOU RIGHT. (Cari D., 49 years old)
  • Talk to others in groups. Share your experience. (Sharon, 51 years old)
  • Stay educated, stay proactive, and be a firm advocate for yourself or for your loved one’s medical care. (Gail, 56 years old)

Marfan Syndrome Resources

What specific resources have you found most helpful?

  • The Marfan Foundation. (Grandma of 9 year old boy)
  • Marfans website and conferences. (Destiny, 21 years old)
  • Facebook groups! (Megan, 23 years old)
  • The Marfan’s Foundation. (Kayla, 26 years old)
  • The Marfan Trust, the UK Marfan Forum. (Ruth M., 33 years old)
  • Getting second opinions and the Facebook group. (Canyon E., 34 years old)
  • The Facebook support group. (Daniel L., 38 years old)
  • Keeping up on my studies of chemistry and biology. (Geoff, 42 years old)
  • The net and Marfan’s support groups. (Cari D., 49 years old)
  • Marfan.org. (Sharon, 51 years old)
  • #1 My faith. I am one of Jehovah’s Witnesses. I have true hope for better days ahead for us all. #2 NMF truly a life line of support and education. #3 Jon R. For his wealth of disability info. (Gail, 56 years old)

Marfan Syndrome Stories

Share an experience you’ve had related to living with Marfan Syndrome.

  • Apart from the joint pain, my grandson enjoys the attention he gets from his height (about 5’8″ at age 9). (Grandma of 9 year old boy)
  • I had back surgery at the age of 12, the most scariest experience of my life; but it’s made me stronger. (Destiny, 21 years old)
  • I was on holiday in Mexico and began talking to a lovely man who asked if I had Marfan syndrome. I was surprised he knew what it was and it turned out his son has Marfans! We’re still friends and he joined the Facebook page and now he’s able to connect with other people with Marfans. (Megan, 23 years old)
  • My dad had an aneurysm when I was nine. They saved him, and he went on to have two more surgeries over 20 years, unfortunately passing away after the third. This experience has taught me that death is ultimately inevitable, and talking about it is important, and helps prepare those you’ll leave behind. (Ruth M., 33 years old)
  • I’ve met some incredible people around the world. (Canyon E., 34 years old)
  • Being 6’4″ has been difficult for me to deal with. I did not care for being so tall, and being visible. I didn’t like the attention. But I have come to appreciate the compliments I have gotten for being my height. (Daniel L., 38 years old)
  • Because I inherited it from my mother, when any of us (me, my mother, aunt or uncle) are in the hospital, the whole extended family comes to offer support- with food or simply company. (Geoff, 42 years old)
  • Found out at 37 years old I had Marfans from having back pain with dural ectasia. Next month my aortic valve ruptured and dissected. I had collapsed on train coming home from work. (Sharon, 51 years old)
  • Gosh I have so many…not sure if you’re looking for a positive or negative here? Positive: I was diagnosed early by my optometrist in approximately 1968 ..I was about 8. He saw one case of sublexed lens amd marfans during his training, and never forgot it. So never underestimate the education we share even with one person or doctor. Negative: I hate that our society is so cruel to those of us who look different …especially “too tall”. The girls back in my day were not as tall as today. …let’s just say, time does not heal all wounds. This cruelty still goes on today, even from family members…I truly despise the actions of bullies. (Gail, 56 years old)