Fibrous Dysplasia (FD) is an uncommon bone disease that can affect any bone in the body. It can affect a single bone and go unnoticed for years, or it can affect virtually every bone, start very early in life, and result in significant physical impairment.
When the long bones (the bones of the legs and arms) or flat bones (ribs and pelvis) are affected, the bones weaken, may bow, are often painful, and will frequently fracture. Affected bones in the skull often expand, may cause disfigurement and, again, are often painful. Once a bone is affected, it never returns to normal.
FD can be associated with birth marks (café-au-lait spots), and a number of endocrine problems. When this occurs, this is known as McCune-Albright syndrome (MAS). The birth marks can often be the first sign of the disease. However, almost any combination can occur. For example, severe bone disease (with or without endocrine problems) can be associated with minimal skin disease, and vice versa.
FD Support Society UK: Raising awareness of Fibrous Dysplasia & McCune-Albright Syndrome and offering guidance to those affected by the condition.
FD Foundation: Promotes mutual support, awareness and a sense of community, while working on research funding into FD/MAS and treatments.
Swimming has been the only form of activity that I have been able to do to keep fit and therefore my idea was to encourage people with FD and MAS around the world to participate in a sponsored swim. In this way, each person will have their own personal reason for taking part while all sharing common experiences and one common goal.
I hope that this event will help improve the physical and mental health of swimmers and raise awareness and funds for FD/MAS whilst strengthening the FD/MAS community.
Swimming is a non-weight bearing activity and many different strokes can be tailored to people with FD in different parts of the body, allowing everyone to participate to the best of their ability. Swimming is one of the best ways to keep fit and strengthen muscle without having an adverse effect on weak bone.
Swimming and staying active is especially helpful for maintaining a positive state of mental well-being. For me I’d spend long periods of not doing any activity and I felt lethargic and down, Swimming can drastically improve the mental health of people with FD/MAS, as it did me. It allows people to understand that they can still be active and appreciate the benefits of it living with a chronic illness.
I also hope that the FD/MAS community will be strengthened by having people with FD take part in the swim, interacting to build a stronger community upon which people can rely when needed for support.