In this episode we will hear from fifteen year old  Tayen, who lives with Hypohidrotic ectodermal dysplasia, which is 1 of about 150 types of ectodermal dysplasia. Most people with hyperhidrotic ectodermal dysplasia have a reduced ability to sweat and struggle to regulate their body temperature, which is one of the symptoms Tayen has to manage ..read more

In this episode we spoke to Tully Kearney MBE, about her life as an athlete whilst managing a progressive neurological movement disorder. They say that to be a successful Olympian you need determination and training, and just listening to Tully speak made it clear that she has both the steely determination and the commitment to train in spades. To use her own words; ‘ It was much easier for me to move in the water than it is on dry land. I was treated as any other kid, I wasn't treated as a disabled kid. I wasn't singled out. I could keep up with kids my own age….so there was kind of just comp ..read more

In this episode we spoke to Dame Laura Lee DBE, the Chief Executive of Maggie’s about the incredible work they do, and the ethos behind it. The ways in which Maggie’s are changing and positively impacting the world of cancer care are truly incredible. Front and foremost of their mission stands a truly reassuring and also hugely empowering statement; “we know that when you’re diagnosed with cancer you need much more than just medical treatment.” With the reality of living with, or supporting a loved one with cancer affecting so many of us this recognition of the importance of a broader support ..read more

In this episode we hear from Christina who was diagnosed with a paraganglioma, which is a tumour in the neuroendocrine system at the age of 34. A neuroendocrine tumour is a rare tumour that can develop in many different organs of the body ..read more

As part of the Days of Rare exhibition Caroline spoke to Same but Different about her Behçet’s disease diagnosis. Caroline was diagnosed with a Behçet’s disease after she started experiencing problems with her vision. The main symptoms of Behçet's disease include painful eye conditions and blurred vision, skin lesions, ulcers and stiff and swollen joints ..read more

We speak to Henry Fraser about his life, his art and his two award winning books. After a life changing accident at the age of 17 Henry truly had to learn to ‘accept and adapt’ to the challenges he faced. And the ways in which he has not only adapted to his new path but embraced life’s unexpected opportunities is quite simply remarkable.  To read more about Henry and to see some of his beautiful mouth paintings or to listen to our Rarity Life Heard podcast episode with Henry follow the link below:  https://www.samebutdifferentcic.org.uk/raritylife Rarity Life is a brand new online pu ..read more

In this episode we will hear from Abigail who lives with SAPHO syndrome. SAPHO syndrome is a chronic disorder that involves the skin, bone, and joints. SAPHO syndrome was given its acronymic name based on the presence of synovitis, acne, pustulosis, hyperostosis, and osteitis in patients. SAPHO syndrome causes inflammation of joints with pain, and those living with SAPHO syndrome often live with chronic pain ..read more

Hannah always knew she wanted to be a model, and still dreams of the day when she can walk into a high street shop and see her photographs displayed as part of a huge promotional campaign. In the Fragility of Beauty Hannah Harpin talks honestly about her experiences of being bullied on the basis of the way she looks, and the ways in which she has fought to reclaim and own the attention she receives. Hannah is determined not to let her rare disease limit or even define her, choosing instead to share her story and to be the change and the role model that she needed to see as a little girl. Rarit ..read more

In this episode we will hear from Michelle who lives with Behcet's disease. Behcet's disease (or syndrome), is a rare disorder that causes blood vessel inflammation throughout your body. Those with the disease can experience numerous symptoms that can seem unrelated at first, and can include mouth sores, eye inflammation, skin rashes and lesions ..read more

In this episode we will hear from Rhys who lives with Superficial Siderosis. Superficial hemosiderosis of the central nervous system is a very rare disease of the brain resulting from chronic iron deposition in neuronal tissues associated with cerebrospinal fluid. Superficial siderosis is characterised by many symptoms resulting from damage to the brain ..read more