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Jean's story - MPS Awareness Week


For MPS Awareness Week this year, we are looking at chasing the signs of MPS and raising awareness of the disease. Jean "Wee Jean" Haining has MPS IVA and lives in Scotland. She was recently diagnosed despite having all the typical symptoms of MPS IVA. Being diagnosed was a big shock to her but with the support from our Support and Advocacy Team, she is slowly coming to terms with her diagnosis.

Symptoms of MPS:

"As far back as my pre-school years, I had joint pain and walked with a peculiar gait. During childhood, I continued to experience pain in my joints and was always very short for my age. By my early teens, my parents became very concerned and sought medical advice. I was diagnosed with Spondyloepiphyseal dysplasia at age 12 in 1983. I just got on with my life the best I could.

I had a son when I was 20 in 1993 and he had a daughter when he was 21 in 2014. Both my son and Granddaughter are unaffected by MPS. At the time of my granddaughter's birth, a genetics consultant enquired about any family conditions. I spoke with the consultant, and she offered to do some genetic testing for me as she was interested in my medical history. She completed the genetic testing and found I didn't have Spondyloepiphyseal dysplasia. At that point, she couldn't tell me what I did have.


In January 2021, I contacted the genetics consultant again as I was still unsure about what was wrong with me, and she retested my DNA. Finally in October 2021 at the age of 48, I was diagnosed with MPS Type IVA which was a shock.

As soon as I was diagnosed, I contacted the MPS Society on the advice of the genetics consultant. Within one day Sally emailed me and asked if she could call me. I was quite overwhelmed with my diagnosis, but Sally was there to answer my questions. She gave me loads of information, and reassurance and made sure I was getting all the correct referrals from my consultant. Sally also put me in touch with other people who have Morquio and groups on social media dedicated to MPS.

Coming to terms with her diagnosis:

I have now made friends who I can turn to anytime which is all thanks to Sally and the MPS Society. All the help and advice I have received from the MPS Society has been so positive, reassuring, and helpful. I felt so lost at the point of my diagnosis, but the MPS Society was there for me and continues to offer advice and support. I can't put into words how much I appreciate their help.”

The pictures depict Jean and her husband who she describes as "her rock" and Jean's son and granddaughter.

More information:

To donate to our virtual bucket for Awareness Week, please click here.

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