connection between Marfan and Scleroderma

[creditcrunchie]

My 15 year old grand daughter has sclerosis thus has badly twisted spine which is at the moment being treated with physiotherapist to strengthen muscles which should help relieve pain. Whilst researching this my daughter has seen possible indications of connections with Marfan. My daughter said that there was no connection between Marfan and scleroderma but I’ve googled it and I believe there maybe. However the papers presented were far too technical for me so I decided to see if anyone has more simplified info. Thanks in anticipation.

[Bkart]

Hi creditcrunchie, I wasn’t sure whether you meant Scoliosis, my sister has this disease. I wasn’t aware of a connection with Systemic Sclerosis but it can be connected to Scoliosis. I have just googled the NORD Rare disease database and whilst Marfan Syndrome is a genetic disorder, you are right in

your thinking process. The info doesn’t specifically mention Systemic Sclerosis, however Marfan does affect the connective tissues. Google NORD re Marfan and also Systemic Sclerosis, you do need to speak to an expert as to whether Marfan syndrome can be present in SSc but it does seem to make sense of your post.

Thank you for posting this as I am still going through the diagnosis process and it may be that there is some remote connection between my sisters Scoliosis and my suspected Systemic Sclerosis, I shall contact my sister as I’m not sure if she has Marfan Syndrome with her Scoliosis. Hopefully we have helped each other with your post. I wish you and your daughter all the best, it must be devastating to have this diagnosis so young. Hopefully there is more help out there for you both and a cure in the not too distant future. Take care and stay strong for

your lovely daughter.

[Bkart]

Hi creditcrunchie, apologies meant to say grand daughter.

[creditcrunchie in reply to Bkart]

Hi Bkart/ that you for your reply. I appreciate the detail you have gone into. My daughter will, when she takes my granddaughter to see the spinal consultant , raise the question about Marfan and we’ll go from there as we really want genetic testing. I will keep you posted. Kindest regards .

[Bkart]

Yes, please keep me posted and good luck to your daughter and granddaughter when they see the Spinal Consultant. I hope your daughter get’s the answers you are all seeking and that it is a positive Consultation.Best wishes.

[creditcrunchie]

Thank you