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Hi All,

I've just had a young (7y/o) chap in to clinic who has Marfan Syndrome.

He presents with bilateral pes planus, ligament laxity, low muscle tone, he is very tall and skinny, tons of nav drift and a bit of drop, has abducted forefoot and adducted toes. so his foot looks a bit like this: ~ (best I could do with time/materials)..

C/o pain in heel/ankle area, unable to run for more than 5 minutes (I get that too.. should I be worried???) , poor coordination and occasionally bashing one ankle into the other whilst walking (although no obvious varum/valgum). On palpation, deltoid ligaments and tib post tendon, insertion (nav process) and muscle belly of left side are sore (5/10). Right side not so bad.

He seems to present similarly to regular hypermobility so I was planning on treating it similarly (combination of Footwear and insoles).

I was just wondering if any one else had experience with this condition and could share any nuggets of information/guidance with me??

To save you googling - Marfan Syndrome: http://en.wikipedia.org/wiki/Marfan_syndrome

Kind Regards,

Sam Randall

 

Hi Sam

I think id be more concerned about him conkin out on your treadmill!!! (Joke)

No seriously i used to be friends with a girl who had the condition. She was the same (part of the condition) that they all tend to be hypermobile (connective tissue cause) and lots of sufferers have the aortic problem that goes with it. She regularly had to go and have the diameter checked. She lives with the fact it could pop at any time. She will need surgery when it gets too distorted.

Personally, i think its a minefield i wouldnt want to go treading in, as the disorder is systemic, needless to say. You cant kick the poor guy out on his arse.

I think i would tend to go easy biomechanically at first and see if the other joints can cope. That way you can always increase.

Sorry not much use



oh...i also would speak with his specialist!

B

 

Sam:

Patients with Marfan Syndrome have ligamentous laxity of varying degrees. Abraham Lincoln was thought to have Marfan's Syndrome. To treat their flatfoot condition, I use deep heel cupped orthoses with medial heel skives and good medial arch contour but don't try to aggressively support the medial arch too firmly or irritation may occur. For more severe cases, like the case you describe above, a high top boot will help tremendously. I treat them nearly identically to the way I would treat any moderately severe to severe pediatric flexible flatfoot deformity with orthoses and high-top shoegear.

Here's a chapter I wrote on flatfoot deformity about 18 years ago.

 

Hi Sam,

Further to the posting from Kevin, I'd also recommend the following:

Lindsey, J.M., Michelson, J.D., MacWilliams, B.A., Sponseller, P.D. & Miller, N.H. (1998) The foot in Marfan syndrome: clinical findings and weight-distribution patterns. Journal of Pediatric Orthopaedics. 18 (6), 755 - 759.

Stewart.

 

I have had a few and have been told there is a bit of a spread of presentations and is related to the Ehlers-Danloss connective tissue condition. In terms of orthoses I have found it really idiosyncratic, a bit of a process to find the best support that they will also tolerate, one 30's lady I deal with has significant fluctuation in the level of her pain and she has a variety of device types that she uses depending on pain and activity level. Good luck, and keep reminding yourself that this is one for which there is no cure and that it will need addressing again as time passes.

regards Phill
regards Phill

 

Many thanks to Kevin, Stewart, phil and B for their help and guidance. Appreciate it guys! :drinks

 

I have had several patients with Marfan's.I have known some for almost 30 years for many years, it is hard to see some of their declines, however, that they return continued help and encouragement is very full fulling. Cardiac surgery is a sure eventuality however that there is that help is a tremendous.

Cheers to all
Freeman

 

Marfan syndrome in children
correlation between musculoskeletal features and cardiac Z-score
De Maio, Fernandoa; Pisano, Calogerab; Caterini, Alessandroa; Bertoldo, Fabiob; Ruvolo, Giovannib; Farsetti, PasqualeaAuthor Information
Journal of Pediatric Orthopaedics B: September 11, 2020

 

Marfan Syndrome: When A Consultation for Foot Deformities Results in
Cardiac Surgery
Ait Malek S et al
Saudi Journal of Medical and Pharmaceutical Sciences: 30.08.2020

 

Musculoskeletal diseases in Marfan syndrome: a nationwide registry study
Niels H Andersen et al
Orphanet J Rare Dis. 2022 Mar 5;17(1):118