Cadasil Support Uk - Raising Awareness

Do you have #cadasil like #symptoms such as #migraines #stroke #cognitive See #nhs new #Bridge #gel #research #undiscovered #genes http://www.cambridgestroke.com/bridge.php

🏃🏼‍♂️👌Good luck today Glenn - continue to #defytheodds 💜

Thank you so much to Rare Revolution Magazine for letting us take over your FB and Twitter to help raise awareness for CADASIL
From me (Chops) and Karen we are truly grateful 😘
#RareDiseases... #DefyTheOdds
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😁

OPEN LETTER TO CALDERDALE ROYAL HOSPITAL
PLEASE SHARE
So today was the day of my neurology appointment. It was only the check up ...... but for me this one was important. For the first time I realised I mattered. ...
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So excited about tomorrow’s #TuesdayTakeover 😁 thank you so much

@cadasilsupport1 on Twitter will be taking over the #raredisease magazines social media account.
If you see any posts about CADASIL from me, please could you share.
#CADASIL is a #genetic #stroke #disorder There is no cure. So it’s just to raise awareness and try and get more people knowing about it. Mainly #neuros and #GPs
... Thanks ever so much. Maybe if you’re on Twitter you could follow the twitter page 🤔
#DefyTheOdds
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#RareDisease and the unknown go hand in hand with #Depression as you can understand. The #Samaritans are starting #TheBigListen campaign today
#ItsGoodToTalk #ItsOKNotToBeOK... #MentalHealth
#SpreadAwareness #DefyTheOdds
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#CADASIL #Facts
CADASIL is an inherited disorder caused by mutations in a gene called #NOTCH3
It is the most common genetic cause of #stroke and #vasculardementia in adults.
... Actual prevelance of CADSIL is difficult to eliminate
Clinical symptoms can be #migraineWithAURA, #Ischemicstroke, mood disturbances, gait problems, cognitive decline, dementia and more...
We are wanting to raise awareness for CADASIL so more #GPs and #neurologists are aware
#DefyTheOdds
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#NHS70 The Trustees of #CADASIL #Support UK would like to thank Professor Markus and his team at #Addenbrookes #Cambridge for all their care and support as without them the charity wouldn't exist #ThisMorning #CamStroke #StrokeAssoc

I'm often asked how I cope knowing I have Cadasil. The truth is some day's can be difficult and it's hard. It's scary not knowing what's ahead as the illness is so unpredictable and different in every individual.
BUT I am also very, very lucky to have reached 44 years of age. I have met my soul mate in life. I have two beautiful children. I have a dog and 2 step dogs (I bet you don't read that very often!) 🐩
So many people don't get to be nearly 45 like me! I try every day t...o help people understand that being diagnosed isn't the end of the world (although it absolutely feels like it at the time).
A few months ago I came across an amazing young lady's letter from her heart - she wasn't lucky enough to reach my age - or to have children. Thankfully she had her soul mate and dog. 💖
Read her words and take them in ...... I think we can all learn from them. We are still living ..... we have to cherish it! Karen x
Holly Butcher's letter is the first comment on this thread 💖 1990 - 2018 Holly left this world on January 4th, 2018 and had written the below words for her family to post after her death.
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2018 #CADASIL #conference The #website has now been updated with the information from the CADASIL conference which took place at #Addenbrookes #Cambridge in #June Have a read when you have some spare time for some #MondayMotivation in this #heatwave2018. All ideas welcome www.cadasilsupportuk.co.uk

We are delighted and so proud to say that Professor Markus from #Addenbrookes #Cambridge has agreed to be our #patron for the #Charity He is a professor of #Stroke #Medicine and #Consultant #Neurologist www.cadasilsupportuk.co.uk #DefyTheOdds

As a registered #charity #Cadasil support UK has now been verified by #Facebook and are proud to confirm we now have a #donate button on our page :) Try it out if you want 😂🤣 #RaisingAwareness for #RareDiseases #DefyTheOdds

On Monday 11th June 2018 the #CADASIL Research Group from the #University of #Cambridge held their second CADASIL meeting at #Addenbrookes Hospital in Cambridge.
It was a great success with international guest speakers Dr Saskia Lesnik-Oberstein from #LeidenUniversity and Dr Geert Hommes from the Dutch patient support group.
They also had an insightful talks from patients; Glenn Bate on his journey to date with a CADASIL diagnosis and a demonstration of the CADASIL support gr...oup from Karen Carter. #camstroke #cadasilsupportuk #raiseawareness
Photo credit: #AnnaDrazyk
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** Calling all #Neuro #Stroke #Migraine specialists **
Do you have a particular interest and knowledge of the #RareDisease #CADASIL? Would you be prepared to be added to our map? Please get in touch. #RaisingAwareness #DefyTheOdds