Nelson's Story

Meet Christina!

My name is Christina, I’m from London. I was diagnosed with ALGS when I was six after my ophthalmologist noticed both myself and my dad had abnormal eye structure. It turned out I’d inherited the condition from him, but neither of his parents had it. There was nothing in the way of support at that time because ALGS is rare. Most doctors had never heard of it. The only advice they could give was ‘learn your limits and don’t try to take on more than you can manage’, so there was a lot of trial and error in my care.

Our family was small and now both my parents have passed. Life was often difficult, partly due to my chronically poor health, partly because my mother was a deeply damaged person who suffered from anorexia, depression, and possibly dissociative personality disorder, and partly because my father had kidney failure and other health issues which kept my mother’s full attention. I was isolated with little emotional support, so I learned from an early age to be more independent. Understandably, my mother was overprotective at times due to my health. All of this contributed to my difficulty connecting with people, especially people my own age as they usually thought I was weird. I did have a very close friend who lived up the road, however. We didn’t get much of a chance to go places but just enjoyed one another’s company. Sadly, she passed away a couple of years ago. My only remaining relative is my maternal aunt, who lives in Penzance. We try to connect around the holidays.

ALGS mainly affects my bone and muscle structure, heart and kidney function, and to a lesser extent my liver. I’ve never had much stamina. It was very frustrating as a child because I wanted to do as much as other children, but never could. The poor kidney function has gotten gradually worse over the years. I’m not on dialysis and hope to avoid it. I also need to be careful about my diet, as too much protein gives me very bad nausea. The way ALGS affected my bone structure was a problem as it gave me a rather unusual appearance. Also, I underwent major facial surgery when I was 12 to correct my jaw structure, but my bones were still growing so it wasn’t very successful. I’m now stuck with a kind of semi-underbite, which makes chewing difficult. I don’t think my self-esteem has ever really recovered as I’m still quite self-conscious about how I look. As time passes, I find I care less about what other people think.

After leaving school I earned a degree in Philosophy, Religion and Ethics from Heythrop College, but wish I’d done something like illustration or game design. I love video games, mostly role-playing ones like Pokemon, and I like Tetris. I find it relaxing. If I could visit my younger self, I’d encourage me to not listen to what the teachers kept recommending I did, as they cared more about graduate statistics than whether a student was doing something they loved. My hobbies mostly revolve around art, reading. Usually fantasy, like Harry Potter. I’m also interested in spiritual and self-help books and enjoy trying to teach myself how to make digital music and video games.

In terms of philosophies, I don’t really have much to share but also feel like I should, considering I’ve lived with ALGS for 38 years. So, pace yourself. Take life one day at a time and be kind to yourself, which is something I still struggle with. I’d also say it’s important to have at least one person you feel able to talk to, as although I’m very introverted just being able to communicate over the phone or even email makes a huge difference.

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