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Larsen’s Syndrome- Rare Connective Tissue Disorder
Bones, Joints & Muscles | Last Active: May 21, 2023 | Replies (3)Comment receiving replies
@lsgm510 Hello and welcome to Connect. Connective tissue is the "glue" that holds everything together in our bodies and even bones are considered a type of connective tissue. It must be frustrating to have a rare disease that weakens connective tissue. I'm not sure why that would keep you from being a candidate for a liver transplant, and I'm not knowledgeable in this area. You may want to look at this discussion in the Transplant group where you can meet @rosemarya Rosemary, a mentor, who is very knowledgeable about liver transplants.
- This and That and Talk - My Transplant
https://connect.mayoclinic.org/discussion/this-and-that-and-talk-my-transpant/
I also found this information about Larsen Syndrome at the Rare Diseases website.
https://rarediseases.org/rare-diseases/larsen-syndrome/
I share your feelings about your care at Mayo. I was a Mayo patient for spine surgery, and later for a broken ankle and was quite impressed with the quality of my care. Having a relationship with expert doctors with whom you trust makes a big difference.
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Thank you for your message. Larsen’s is a horrible condition! But, so are many others.
I’m going to speak more specifically about the possibility of liver transplant when I see my Hepatologist later this month.
I will tell you that I believe in a great healer — our Jehovah-Rapha. This specific name for GOD means The God Who Healeth. HE can do that if it is His will. I also thank my Lord for giving doctors the intelligence and motivation to work so diligently to be His helping healers!
As for the website you mentioned, perhaps there is a way to share and I can tell other Larsen’s Syndrome persons to be screened. A week or so ago I came across a report by my Primary Care physician from 2014. The first diagnosis on my list was “Abnormal Liver Function Test”. However, she never mentioned it to my husband or me nor did she ever pursue the issue. That is mighty scary!
Thank you so much for your involvement in bringing people with these needs together to share information.
Linda Moores