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​Winter 2017 RARE Minds

Rare disease mental health

Shira Strongin, is RARE Inspiration for a growing tribe of Sick Chicks. When Shira Strongin started using a blog and the pen name Sick Chick to process her journey with rare disease, little did she realise the impact that it would have or the sisterhood it would create. – Full Edition Link

It comes as no surprise that the effects of having a rare disease can take its toll on the mental health of the individual and indeed that of their families. Those suffering with a rare condition often have daily physical pain and challenges to contend with, battles accessing help and support, prejudice and misconceptions leveled at them, all the while living with the uncertainty a rare disease can bring. Alongside, often their family, loved ones are caregivers face many of these daily challenges too.  

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Torie Robinson is the Founder of Epilepsy Sparks, an international public speaker, writer and an Ambassador for ‘’Yes I Can’’ with the British Government Department for Work and Pensions. Torie is a passionate advocate of mental health and wants to continue breaking down the barriers around this. This is Tories mental health first aid guide. 

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 #RareRevolution #Mentalhealth #Epilepsy 

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This month the Samaritans are running their #TalkToUs campaign. We want to share our RARE Mental Health Spotlight to highlight how important it is to look after your mental health even if you are looking after someone else. When carers are bitten by the black dog, Dan White is a broadcaster, columnist, writer and campaigner for both disability and mental health. He is the proud father and carer to his daughter who has spina bifida. Dan speaks candidly about his love for his daughter, the lack of support and barriers that carers are up against, and the enormous impact this can have on their mental health. 

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Battling pain and misconceptions 

The physical pain of living with adhesive arachnoiditis (AA) and Tarlov cyst disease (TCD) can be excruciating, but in addition, those living with these rare conditions often contend with a lack of understanding, a long journey to diagnosis and even misconceptions about their pain from medical professionals. Donna Corley talks to RARE Revolution about the battles she and the AA and TCD communities face and their effect on mental health. 

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Where is the safety net? 

A study of patients with paediatric acute-onset neuropsychiatric syndrome and paediatric autoimmune neuropsychiatric disorders associated with streptococcal Infections in 2018 revealed some shocking statistic which indicated that most were not only falling through the net, but that in fact there is in essence no effective safety measures in place for such children. The consequences are catastrophic and life changing for these families. Nicola Miller talks to two mums, Cindy and Vicky about their personal stories which are utterly compelling

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Coping with mental health  issues can be exhausting and often overwhelming. Even with a strong support network around you, sometimes you need to reach out for that extra help, support and guiding hand. RARE Revolution have compiled a directory of just some of the services available who can hopefully shine some light on the darkness. 

Rare Revolution (

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