Larsen Syndrome

jinnty

Hello, I hope this post finds you all safe and well as can be. I requested my medical notes, and on looking through them, I discovered as a child I had been diagnosed with Larsen Syndrome, and on looking it up, I was astounded to discover that it describes me to a T. But, I can’t find any information on wether this is a childhood illness, or it continues through adulthood, can anyone give me any information please? I have been told my knees are bone on bone, but I will not get operated on until I’m 60 or over, I’m 54. Yes, I know a lot of people have had surgery before then, but unfortunately my drs have dug their heels in. But, if this syndrome continued into adulthood, I may be able to point it out to them. Thank you in advance for any comments. Stay safe and as well as you can be. X

poppy123456

HI,

Having read through a few links that i found, i can't find anything that says it does or doesn't continue into adulthood. I'm a medical professional so can't give you any medical advice. Have you spoke to your GP regarding this because they maybe able to give you some information. In the meantime here's the links i read through.

https://rarediseases.org/rare-diseases/larsen-syndrome/

https://medlineplus.gov/genetics/condition/larsen-syndrome/

https://www.orthobullets.com/pediatrics/4090/larsens-syndrome

jinnty

Hello @poppy123456
thank you so much for your reply. I haven’t spoke to her yet, as I’m waiting on physio, so I’m thinking they might know more about it. But, I will read your links and see what I can find. I also have more notes to read, so I might hold off contacting my gp, in case their is more reference later in my notes. But, sincerely, huge thanks for your input. Take care and stay safe. X