In support of #YouthMentalHealthAwarenessDay (7th September), Findacure launched the #RareMinds: Youth Campaign and partnered up with RARE Youth Revolution to highlight how rare disease and conditions can affect young people's mental health
October was CRMO Awareness Month & our #RareMinds: Youth Month! Kicking things off is Hannah Baker, sister to C.R.M.O warrior Joseph Baker, who talks about her perspective as a rare sibling
For most of my life, I was the kid that was always sick. Growing up in Boston Massachusetts I was constantly sick—whether it was a cold or a viral infection that was going around—I had it. After years of being sick, the doctor recommended moving to a warmer climate to keep me from catching each and every cold. My parents wanted to do what’s best for me and we packed up and moved to Texas. Almost immediately after we moved to Texas we saw results, I got sick less often and was feeling better. Things settled down for the Baker family, but not for long.
A few years after moving into our house, Joseph broke his leg. We thought nothing of it, he was a very active kid and lots of kids break a bone? Right?
He was casted and it healed within a month or two and we moved on. Later on he broke his leg twice more, which we thought was strange, but didn’t think there was a deeper, underlying problem. He also later had a bone bruise in his arm and a few more injuries that were never breaks but were often more painful than any break would be. During this time I thought he was just super active and athletic and was so thin and frail that the injuries were simply just from being aggressive.
I went through school normally and was having fun with all my friends and the sports I was doing. Around seventh and eighth grade Joseph started to be in a lot of pain and was unable to walk due to all the pain in his legs and back. At one point his back began to hurt so bad from the spasms he had that he would pass out. These spasms terrified me. He would scream in pain for what seemed like forever, would pass out and then wake up disoriented. This was when we all realised this was much more than a few breaks from being active. He was taken to the hospital where he would be given steroids or meds and then shipped out.
Doctors were telling my mom left and right that there was nothing wrong with him and they didn’t know why the things that happened were happening. My mom refused to give up and found a specialist in Delaware to help us piece together the pieces of the puzzle we were missing. The first diagnosis we were given before Delaware was Osteogenesis Imperfecta, also known as brittle bone disease. This diagnosis was shocking to me. If this is what Joseph truly had his life and mine would drastically change. There would be no more sports or roller coasters. No more running around all the time, no more regular teenage life. When they left for Delaware I stayed back with my grandparents where I tried to continue a regular routine.
This was one of the first times I realized that I wasn’t the one that needed all the attention anymore. I felt lost without my parents around and didn’t know what to do with myself.
When they came back with the diagnosis of C.R.M.O I felt relieved. Maybe I’d have my family back, maybe things would go back to normal. I really thought this was the start of a new era where I would have no worries. However, I was very wrong. Instead, this was the start of trips to Houston every four weeks, meds all the time, and watching Joseph fall into a depression without his sports.
My mom and dad were so busy taking care of Joseph I felt like I was just there for relief, a break from the chaos of schedules, meds, and infusions.
I tried to create the least amount of stress and problems I could. I kept good grades, never caused trouble and kept my friend drama and feelings to myself. I constantly tried to make my parents jobs as easy as possible because I knew they were stressed with everything going on.
I stayed that way for awhile until I told my family. They felt bad and said they wished I never felt that way, but I don’t regret giving my parents a break from worrying. After years of treatment and infusions he went into remission which was super exciting for all of us. We had a break from all the trips and infusions which was a blessing. We all got caught up in the bliss of normalcy that when Joseph’s stomach started hurting we prayed it was just a bit of a stomach ache. As the days went on and his stomach got worse I fell into my old habits of going through the motions of the days. My parents would check in on me but I would just blow it off as per usual. Joseph ended up in the hospital again with few answers and more worry. He was in there for a week just for the diagnosis we already expected he had. He was diagnosed with Crohn’s disease which affects the stomach and intestines.
While he was in the hospital I struggled with my friendships and how they were treating me. I was starting to realise that the people that were supposed to be my friends were treating me like crap and were constantly hurting me.
With the weight of Joseph being sick and the loss of most of my friends I was feeling really frustrated and sad. I often spent many nights crying in my moms lap trying to understand why things were unfolding the way they were.
When things began to settle again I was still struggling to find the people that I fit in with and having Joseph home was only partially helping. Things felt normal but not where they were and before we knew it Corona struck and Joseph’s meds that treated his Chrons were not treating his C.R.M.O as well. This was one of the biggest disappointments because we were hoping it would do the job. Because the med wasn’t treating both Joseph had to go back to the infusion as well as his shot for Chrons. Both these meds destroyed his immune system and left us locked at home during the pandemic.
I was only able to see a few people which made me feel even more alone and frustrated. In the past few weeks I have realised who my true friends are and they have been incredibly supportive with everything that has been going on. I am a true believer that everything happens for a reason and I know that this has shaped me into the person I am now and how I treat people.
Since Joseph’s disease is unknown and you can’t see visible proof of it no one believed he was sick and often bullied and made fun of him. Seeing first hand how he was treated, I now often try to give people the benefit of the doubt and think about the fact that we never know how people’s home lives are.
I never talked about how I felt and how sad I was to see Joseph so sad and often let it eat me inside. I now know that that was not the best option and that my mom was always there for me to listen. I am so grateful for my family and all that they have done to support Joseph and I and will never take for granted their love and willingness to fight for us. Joseph has had a hard journey, but so has the rest of my family including me and I am so glad to share this story to help make other unknown diseases like C.R.M.O more known and supported.
Written by
Hannah Baker
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.