By Jill Dando News
This Saturday (15 May) is International MPS Awareness Day when people all over the country will ‘Wear it Blue’ to show their support of people with the disease.
MPS diseases are a family of rare, life-limiting lysosomal storage disorders that can affect both children and adults.
Symptoms of the disease vary in severity but can include stiff joints, abnormally-shaped bones, heart disease, delayed cognitive development, unusual facial features such as flat faces and shallow eye sockets, and fluid on the brain.
It is estimated that nearly 6% of the UK population (around 3.5 million people) will be affected by a rare disease at some point in their lives.
‘Wear it Blue’ is part of MPS Awareness Week (10-16 May 2021). National charity the MPS Society which supports 1,500 families with rare diseases in the UK, is raising awareness of the conditions and is asking for donations to help give children earlier diagnoses and access to better treatment.
They have created a virtual bucket collection for MPS Awareness Week and are encouraging the general public to join in the fun and donate to their virtual bucket on the 15 May to raise vital funds so they can make sure that MPS is diagnosed early and that treatment is accessible for everybody.
If you wish to donate to MPS Society’s Virtual Bucket Collection, please visit https://www.justgiving.com/campaign/MPSAwarenessWeek2021.
This year the charity’s awareness campaign is asking the public to think about people with rare diseases who continue to face a difficult choice over whether to stop shielding and resume their life-changing treatments due to concerns over catching the COVID-19.
For many, shielding has led to anxiety and loneliness, while treatment ‘holidays’ have meant increased pain and fatigue. As lockdown restrictions are lifted further on 17 May, they will make hard choices around returning to ‘normal’ despite the continued risks.
Bob Stevens, Group Chief Executive Officer at the MPS Society, said: “MPS Awareness Week is always the highlight of our social calendar and this year will be no different. We are encouraging as many people to get #EverybodyIn and to make sure people with MPS and other rare diseases have access to the treatment that they need.”
The charity is encouraging everyone to donate and spread awareness of MPS and their services as much as possible, through word of mouth or by using #EverybodyInon social media. More information can be found at: mpssociety.org.uk/awareness-week.
MPS Society have a number of fun virtual activities lined up for the general public and their supporters to coincide with MPS Awareness Week. Many are themed around the MPS Society colour which is blue, such as blue-themed sensory messy play, a blue-themed painting workshop and wearing blue to show support.
If you wish to donate to MPS Society but don’t have access to a computer, please call their Fundraising team on 0345 389 9901. By donating just £6, you could pay for a newly diagnosed family to receive a disease-specific information pack.