Anyone heard of Larsen Syndrome?

[Jinnty89]

Hello, I hope this post finds you all safe and well as can be. I requested my medical notes, and on it in childhood I was diagnosed with Larsen Syndrome, something I’ve never heard of or about. On looking it up, it is describing what I have, and I was shocked to read it, as it truly describes me. But, do anyone know if this is just in childhood or does it continue through adulthood, and if so, should I bring it up, as the surgeons won’t operate on my knees until I’m over 60, I’m 54. Just mega curious about this, so any thoughts would be more than appreciated. Stay safe x

[Happyrosie]

In all my years as a medical underwriter I’d never come across this syndrome. Proving its rare and had not needed medical intervention for those people who applied to us for life assurance. I suppose the only thing for you to do is find some rheumatoid expert who has dealt with this. Is there a charity which is concerned with this syndrome? Perhaps ask one of the arthritis charities for advice.

All the best

[Jinnty89 in reply to Happyrosie]

Thank you for taking the time to reply, I will ask them. No one I’ve spoke to has heard of this, but the symptoms are definitely me. So I will ask on their forum. Thank you again. Take care and stay safe x

[1961jh in reply to Jinnty89]

Hello Jinnty,My advice as a retired nurse is to request via your GP a Genetics referral. This will provide you with full correct advice and information that you are entitled to receive. You must have so many questions. Reading your diagnosis and not being made aware verbally by a health professional is understandably questionable practice. You may find the Geneticist would want further tests to absolutely determine what you have read is correct.

Online Google search does bring up a support group that also states there is a Facebook Group.

Best wishes

[Jinnty89 in reply to 1961jh]

Thank you so much for taking the time to reply to me. Yea, my GP did know I had it, as it’s mentioned in future reports. But, nothing has ever been said to me about it. I did find out a few more different things, and to be truthful, I’m angry that there has been these problems kept from me. But I am going to do what you say and call them to ask for a referral, as I can’t find anything that says it continues into adulthood. Thank you again, your inpu has been very much appreciated. Take care and stay safe. X

[1961jh]

Hello Jinnty,Your local large NHS Trust will have a Genetics Department, check their website. You may want to look into contacting their Specialist Nurses to explain the situation and ask how long it would take to be seen. They often have a generic email address you could use to contact them. Specialist nurses are very helpful.

Best wishes from one

😉

[Jinnty89 in reply to 1961jh]

Thank you again, I will have a look. X