Please see the official FD Making Waves website for all the information you need about the event! www.fdmakingwaves.com

Fibrous Dysplasia (FD) is an uncommon bone disease that can affect any bone in the body.  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 painful. Once a bone is affected, it never returns to normal.

I have monostotic Fibrous Dysplasia in my right femur and have been having recurrent fractures, breaks and surgical procedures since 2008. Understanding that this condition is a permanent one has recently inspired me to seek out others in the FD/MAS community with the goal of helping them to live whatever life they choose to live, without the burden of feeling bound by their physical condition. This is why I wish to organise a global event to raise awareness and funds for Fibrous Dysplasia and McCune Albright Syndrome. 

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 this event will also encourage people with FD/MAS to become more active, improving their physical health. Swimming is a non-weight bearing activity and many different strokes can be used and tailored to people with FD in different parts of the body so that they are able 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. People often use hydrotherapy, as I did, as a form of rehabilitation, and this may be the first step towards swimming. I loved going to hydrotherapy as it allowed me to walk in the water unaided, having previously been completely reliant on crutches. This inspired me to push harder towards the goal
of recovery.

Swimming and staying active is especially helpful for maintaining a positive state of mental well-being, something that is of paramount importance with a chronic condition such as this. I know first-hand the

effect this condition can have on one’s mental health and for me, swimming has helped a lot. My hope is that it can do the same for people with fibrous dysplasia across the globe so that they do not feel as though they are any less than anyone else, or alone. 

I hope that the FD/MAS community will be strengthened by having people with FD take part in the swim, a community upon which people with the condition can rely on when needed for support later.

I am aware that people will have varying degrees of
mobility but even one person swimming (or walking) one length that wasn’t previously thought possible would be an incredible achievement, making this whole event a success.

I know first-hand that this condition is extremely difficult to live with, especially as a child and people simply do not know about it. This is where we can make a difference. Raising awareness of FD/MAS will encourage all to learn more about the condition and provide more money to support research into the field developing our understanding of the condition. We can do all this so that in the future those with FD/MAS have a better experience and quality of life.