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#RareMinds youth campaign - Joseph Baker, C.R.M.O warrior

Recently, Joseph's sister, Hannah shared her story of living with a diagnosis of C.R.M.O in the family. Now let's hear what it's like to live with a rare disease as a teenage down in Texas.

This is Joseph's Vlog series ''Becoming''.

In this video Joseph explains how his RARE condition effected him at the start:

''My body attacks my bones from the inside out, weakening them. There is not a day that I don't deal with pain, C.R.M.O is very rare effecting only one in one million girls and one in six million boys.''

Joseph tells us how he was first diagnosed with C.R.M.O four years ago, due to extremely painful bones and back spasms. After a few speculations from doctors about what his condition might be, they where leaning to the possibility of it being Osteogenesis Imperfecta (OI) . Joseph and his family flew to Delaware to find out more.

In Delaware he was taken in to hospital where he spent two weeks having tests, different medicines for pains. And eventually ''Dr Rose came in and was like, I know what's wrong with your son''. Joseph and his family were very shocked. The doctor then gave the diagnosis of C.R.M.O.

The treatment plans were laid out including REMICADE infusions once a month which helps with this condition.

''Remicade in a lot of ways saved my life'' Joseph is now able to play sports again thanks to these infusions.

The treatment was working and Joseph was feeling good! In about 2019 the hospital carried out an MRI and confirmed that his lesions (the flare sights) were shrinking this meant he was going into remission. Which was super exciting, sadly after around two or three months of feeling better Joseph noticed the return of his pains and he went for a scan.

When the MRI came back it showed way more lesions than he ever previously had. Joseph also noticed a new feeling of stomach pain. After various tests he was diagnosed with Crohn's disease. Thankfully Crohn's disease is treatable with an injection once a month to treat the pain. Joseph was put back on REMICADE for C.R.M.O, right now it is working and he is feeling good and about to try some basket ball.

''After a lot of downs and a lot of ups, a huge roller-coaster of emotions, it has definitely shaped me to who I am today, I wouldn't be the person I am without going through this stuff, I feel like it has made me more empathetic, more caring and just a better person overall, as much as I hate what's happened I wouldn't trade this in for the world as it has shaped me''

Joseph Baker has subbed in one of his best friends, Sean Bookout, to discuss his perspective on having a friend who lives with a rare disease. Sean explains how the two met and became pals! Sean tells us how during one of Joseph's flare ups they had to explain to their basket ball coach to 'give him a break'.

Sean wouldn't know that Joseph had this disease if he hadn't been told about it as it is all internal and invisible on the surface.

''It's kind of like a cancer, unless you see the hair falling out, you can't see what's going on with me because I try to hide a lot of it as I don't like people knowing, this is kind of huge I am getting it out there for the world to know so I can tell my story. Thankfully for Sean he has been there for me in my roughest times helped me through a lot of it, this is kind of my story my 'becoming of' story, it has been a long long time with a lot of really sad moments, a lot of really happy moments, a lot of letting my hopes down and getting them up, a lot of disappointments and a lot of things that came through, I am really excited to share my story with you. Thank you Blayne''

Findacure is a UK charity that is building the rare disease community to drive research and develop treatments. We are here to transform the world’s understanding of rare diseases and the devastating impact they have on people’s lives.

Our vision is a world in which all rare diseases have treatments – made together with patients, for patients.

How are we achieving our vision?

  • We transform the lives of people affected by rare diseases by working directly with patient support groups, giving them the skills to professionalise their work and the confidence to recognise their own expertise in their rare conditions.

  • We accelerate change in rare disease research and care by building a strong, supportive, and collaborative rare disease community that works for the benefit of all rare conditions.



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