Story
🥾🥾❤️ James and I Are taking part in this years Kiltwalk and we are hoping to raise as much as we can for the Marfan Trust❤️
As many of you may know Marfan Syndrome is a genetic condition that affects the body’s connective tissue. Connective tissue helps provide structure to the body, binding skin to muscle and muscle to bone. It provides the stretchy strength of tendons and ligaments around joints, and in blood vessel walls. It also supports the internal organs. This tissue is made of fine fibres and ‘glue’. One fibre is called fibrillin. In Marfan syndrome, a change in the fibrillin-producing gene, fibrillin-1, means that this protein is deficient in connective tissue throughout the body, creating an unusual stretchiness and weakness of tissues.
This has far-reaching implications and can affect the eyes, lungs, gut, nervous system, skeleton and, most seriously, the cardiovascular system. Treatment for Marfan syndrome focuses on managing symptoms and preventing life threatening situations. Care is highly personalized and requires a team of specialists to monitor the cardiovascular, skeletal, and ocular clinical features.
Marfan Syndrome has affected and continues to affect many members of my family and the need to raise awareness and funding is a cause that is very close to my heart. My Grandmother Marion had Marfan syndrome and she did everything she could to raise awareness and provide support to those affected.
Raising funds for the Marfan Trust will help to -
-support those with Marfan syndrome and their families
- Provide educational information to raise awareness of Marfan syndrome
- To support medical research to enable better treatment for patients.
I would be so grateful for your donations to this very worthwhile cause. Thank you to all those who have already donated ❤️
Please click on the link below to donate if you can 👇
https://www.justgiving.com/page/hayley-gentleman-1782477942246?utm_medium=FR&utm_source=CL
