what is fd/mas?

Fibrous Dysplasia (FD) is an uncommon bone disease that can affect any bone in the body. The severity of the disease covers a wide spectrum. 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. 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. 

FDSSUK website

Learn more about FD/MAS!

What is

Making Waves

I hope this event will 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 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, something that is of paramount importance with a chronic condition such as FD/MAS. Swimming can drastically improve the mental health of people with FD/MAS across the country and allows people to understand that they can still be very active.

 

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.

 

The money raised will be used for bone pain research, a wheelchair/equipment fund and funding for patients to attend events hosted by FDSSUK.

People who are close to the condition may also wish to take part to support a friend or family member and if nothing else swimming is an excellent way to stay fit! 

 

 

Learn more about the benefits of swimming!

How do I take part in

Making Waves

1. Make an account for the website to let us know you're interested in taking part. On your profile please let us know:

 

 - How far you would be swimming 

(Doesn't have to be swimming, it could be walking in the pool or something else tailored to your ability)

 - Your story and why you wish to take part on your profile (see Nish Rai's profile as example)

This way we can learn more about each other, further strengthening our community.

 

2. Make sure a pool close to you is available from the 22nd February - 29th February

 

3. Get training!

 

The event will occur during FD/MAS global awareness week on 22/02/20 - 29/02/20 

 

On this site, I will be posting tips to improve swimming training and technique for swimmers with different mobility issues so that they can achieve their goal. This is also a platform upon which we can help, connect and communicate with each other. It will be here to be used whenever you need any help and others can support you.

 

All we ask is that you push yourself. Then we realise that we are not bound by the limits we set ourselves when living with a chronic condition. There is a lot we can do with a strong will and the support of others. This realisation allows us to live a much freer life.

Get Started!