Remy Kendall came in to talk about a little known condition called Madelung Deformity to raise awareness and also talk about a fundraising event:-
Charlottle, Kendall’s mother, set up https://madelungsawareness.org/ which is the only website dedicated to the condition. The site offers advice, help and raises funds which go to look into a cure or new treatments.
Remy has already completed a fun run to raise money and you will find her charity bracelets in many local shops. Remy is a budding singer with a great voice so we hope to have her back in the studio to sing live in the future.
______________________________________________________________________________
QUIZ NIGHT SATURDAY 23RD APRIL HUTTON FREE CHURCH, HANGING HILL LANE
6pm – 9pm
£5.00 for adults and over 12 / £2.50 for children under 12
Raffle
Drink, snack and free nibbles
Please bring your own NON alcoholic drinks
______________________________________________________________________________
What is Madelung Deformity
Madelung’s Deformity is a rare wrist deformity that affects around 1 in 800,000 but this is just a rough guide as not everyone gets correctly diagnosed due to the rarity of it.
Madelung’s Deformity effects the Ulnar & radius bones in the forearm & wrist. they grow faster than they should and continue to grow when they should of stopped.
Madelung’s Deformity becomes more apparent during puberty (ages 8-12) due to the growth spurt that occurs during this time, it is more common in females than males.
There is no cure at present for Madelung’s Deformity it can be managed with pain medication, wrist supports & other coping techniques, which differs from person to person.
In some cases surgery is sometimes recommended.
Surgery may or may not work depending on the severity of the Madelung’s & it could make The wrist (wrists) worse.
Once surgery is done it can not be undone.
Bilateral Madelung’s Deformity is when it presents in both wrists around 50% of Madelung sufferers have it in both wrists.
