Sarah (ML III)
Sarah has ML III.
Hi, my name is Sarah. I’m 31 years old and I’m a part-time youth worker.
I have Mucolipidosis III (ML III) and was diagnosed when I was 7 years old after many different diagnoses, from many doctors. ML III is a very rare genetic storage condition; it results from a deficiency of certain enzymes. It is a progressive disorder that affects many parts of my body. I suffer with stiff and painful joints similar to arthritis. Also the ends of my bones crumble and this has caused many problems for me. Due to the crumbling I have had to have many orthopaedic operations such as six lumber spinal fusions, both hips replaced, left knee replacement, neck fusion, neck decompression, ankle and knee arthroscopy’s. One day my plan is to be the bionic woman!
Despite having my condition I live independently and have a lovely one bedroom place. I like to live as independent as possible, some people say stubborn. After operations I have help from carers, until I can once again be independent and look after myself.
Ever since I was diagnosed with ML III the MPS Society have always been there, for myself and my family. They helped my parents with benefits, getting me statemented at school, helping me get in to a physically disabled boarding college. When it came to living independently the MPS Society helped me so much as I needed to move from a house to a flat and my local council were being difficult. The MPS Society helped and supported me a lot with this process and if it wasn’t for their involvement I believe that I would still be stuck in a house that wasn’t suitable for my needs. I know that if I ever need anything such as support or advice I can phone them.