National charity MPS Society calls for donations for rare genetic disease as families weigh up risks of ending shielding

By Jill Dando News

Families with children with rare diseases continue to face a difficult choice over whether to stop shielding and resume their life-changing treatments due to concerns over catching the virus.

Some 91% of young people and their families have been shielding since the pandemic started over a year ago. 

Many have cancelled or had longer wait times for operations and some have taken treatment ‘holidays’ from care at home and in hospital to avoid the virus which would compromise their immune systems. 

For many children, 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, their families will make hard choices around returning to ‘normal’ despite the continued risks.

This MPS Awareness Week, ending on 16 May, 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.

Bob Stevens, Group Chief Executive for the MPS Society, said: “While choosing to shield and take treatment ‘holidays’ has kept many of our young people safe, we know some of our children have suffered from tiredness and pain, while our families have felt isolated, with increased mental and emotional health concerns.

“We also know that once our families feel confident enough to resume their lives, they will face longer waiting lists for referrals for diagnosis and treatment.

“That’s why MPS Awareness Week is very important this year – our families have taken every step to protect themselves and now we want to make sure their quality of life is improved.

“As the country opens up further on 17 May, we’re looking to raise money to support our charity’s work in raising awareness of these rare diseases to support and enhance these young lives.” 

MPS (Mucopolysaccharide) diseases are a family of rare, life-limiting lysosomal storage disorders that can affect both children and adults. 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.

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 #EverybodyIn on social media. More information can be found at: mpssociety.org.uk/awareness-week.

MPS Society has several 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 a blue-themed sensory messy play workshop and a ‘Wear it Blue’ day.

If you wish to donate to MPS Society, please visit mpssociety.org.uk/donate-now or 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.

For further information or to arrange interviews, please contact the Communications team on 0345 389 9901 or email communications@mpssociety.org.uk

Founded in 1982, by Christine Lavery, MBE, the Society for Mucopolysaccharide Diseases, (MPS Society), are the only registered charity providing professional support to individuals and families affected by rare, life-limiting genetic diseases such as MPS, Fabry or a related disease in the UK.

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