Dr Child's Casebook: Life After 50 for a Mature Marfan
With increasingly sophisticated treatment and awareness comes longevity of life as Marfan folk grow older with their syndrome. In this week’s episode, Dr Child discusses with a longstanding patient her experiences and expectations as she ages.
Q: I am now 52. I have my heart checked annually (luckily it is fine) and I am a patient at Moorfields Eye Hospital. I have advanced glaucoma and have had cataracts in both eyes, detached retinas and displaced lenses. I was reading on your fact sheet that patients should be treated by a physician familiar with Marfan. I have never been seen by anyone like this only my GP, the consultants at Moorfields, and where I get my heart checked. Would you be able to advise me on whom I need to contact to make an appointment to see a physician? As I am getting older I am more aware of the issues that may be related to Marfan. Separately, your leaflets are very useful and I found out more information on Marfan syndrome that I didn't know of, particularly around some of the symptoms I’ve been experiencing lately and hadn't realised the correlation with Marfan i.e. fatigue which I have been noticing a lot more recently. I just wanted to ask if there are any supplements that you recommend patients with Marfan could take which may help? I’m particularly referring to supplements to help with joints.
A: Your question is a good one. Obviously that is an ideal situation, if you have one physician who takes a special interest and has quite a few patients with Marfan syndrome. Basically it sounds as though you have a good support team assembled already. Your team leader is your GP, and he will have an overview. As you get older, this condition goes on developing. And you may develop other features. I will send you a booklet on getting older with Marfan syndrome. This was written from the patients’ outcomes on survey. Please remember It is only a summary. If you find it helpful I can send more when we return to our office, to share with your physicians. If you have further questions please get in touch.
Regarding supplements - this is a very good question. Yes is the answer. A one-a-day multivitamin/ multi mineral supplement is important. This is because making joint cartilage and connective tissue in general requires vitamins, especially C, up to 1 gram a day. This can be taken on its own (no more than 1 gram) or as a combined supplement. Vitamin D is also important. Then there are 4 minerals - manganese, magnesium, calcium and copper needed as trace elements. They act as cofactors speeding the production of collagen, another fiber that gives tissue its strength.So it is easier to take all these at once, in a one-a-day tablet. They are not expensive - Boots own brand or other brands have standard formulas.Some people swear by chondroitin/ glucosamine supplements for joint pain. This is very subjective. It can’t do any harm, but if after 2 weeks you see no benefit, stop.Don’t buy a large quantity.Joint pain can make you feel tired, so you might ask your GP to prescribe an arthritis medication like Brufen.As you get older, you may have to split your day into two parts, and have a nap in the afternoon. Or work part-time, or from home.Gentle regular exercise is very important, especially if it incorporates stretching. Swimming is excellent. This maintains mobility, and muscle strength to support joints.
For more information, please refer to our Growing Old with Marfan Syndrome Leaflet