Turner’s Syndrome and rare diseases; By Alisha Malik

1 in 3 young children with rare and genetic diseases will not live to see their 5th birthday. (REF: globalgenes.org)

5 babies are born with Cystic Fibrosis and 2 sufferer lives end every week. (REF: cysticfibrosis.org.uk)

Others are denied the chance to live entirely, due to discrimination against Down’s syndrome. (REF: stopdiscriminatingdown.com)

Each sufferer faces their own battle of hardship, discrimination and a struggle against death, including girls with Turner’s Syndrome.

Before drawing their very first breath, children are forced to live a life of hardship and adversity, not having the chance of living even a single day without their condition and its brutal symptoms which can include heart defects, kidney problems and high blood pressure and can further reduce life expectancy by over a decade. These conditions can cause severe challenges in simple daily tasks for people who don’t know a life without their disease.

But you can help change this.

The last few decades have been highly progressive in not just understanding these genetic disorders better due to advancements in research which has allowed improvement in the diagnosis of these conditions but promoting awareness which to this day remains a struggling feat. However, it is also vital to ensure that families affected by these disorders receive the necessary support, help and guidance as currently, there still remains a vast array of incorrect information provided to the community and the public as well as the lack of support available to families.

And this is where YOU can help. You can provide immense help in support groups for families affected by these diseases, you can help to raise awareness or you can helping fundraise to progress the work of Ragdolls UK.  Turner’s Syndrome occurs in 1 in 2500 girls are born with Turner’s Syndrome and we work tirelessly to ensure they achieve their full potential. Just £2 per month can go a long way to opening support groups for Turner’s girls and their families!

If you would like to discuss Turner’s Syndrome or enquire about one of our support groups please contact ragdolls.uk@gmail.com


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