Mum Whose Daughters Have Scleroderma Helps SRUK Produce Schools Guide

Both of Alison's daughters have scleroderma, and having experienced the lack of understanding around the condition, she set out to help SRUK create a guide to scleroderma for schools.

Alison Grunwell, a mum of three from Doncaster whose two youngest daughters have scleroderma, has worked with us to produce guidance to help schools support others with the condition.

Alison’s daughters – Eliza, 12, and nine-year-old Eleanor – both have a ‘localised’ form of the condition, which means only the skin is affected.

Eliza was diagnosed shortly before starting primary school in 2014 after Alison spotted a ‘bruise-like’ mark under her armpit. She says the condition has had a big impact on her time at school, especially in the beginning.

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We had to miss quite a bit of school to go to appointments and Eliza was given strong medication, including steroids, which made her feel tired and ill, so she needed more time off because of that. The school didn’t really ask many questions, I just told them as much as I could.

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Eliza was initially given an oral drug called methotrexate to suppress her immune system in addition to steroids, but this seemed to stop working after a while and she had to switch to another type of medication which was given as an injection. 

After about a year, she was taken off the injections and prescribed another oral treatment, mycophenolate mofetil, which she takes twice a day.

"Eliza’s now at secondary school and typically misses one day every three months to see her consultant. Eliza has a tendency not to ask for help at school if she’s struggling, but she’s started to complain more about pain travelling from her hips, down her thighs and into her knees so had to speak to her school’s pastoral team so that they could keep an eye on her and spot when she’s feeling tired or in pain," Alison says.

Meanwhile, Eleanor was diagnosed in 2018 after Alison noticed a patch of skin on her ankle that looked similar to Eliza’s. She is currently taking the same medication as her sister.

Alison continues: 

“Eleanor struggles with hospital appointments, blood tests and taking her medication. She has autism and sensory processing disorder as well as scleroderma, so she finds these things more challenging than others might. Having the school know about this and understand the physical and emotional effect it can have on your child is crucial.

“When Eleanor started a new school in January, they knew she had scleroderma but had never heard of it before. If schools don’t know about scleroderma, how can children get the support they need to thrive in that environment?”

To help teachers and other school staff understand and support other students with scleroderma, Alison has worked with SRUK to produce an informative guide.

The guidance - ‘Scleroderma: A Guide for Schools’ - focuses on how schools can support students with scleroderma and covers what the condition is, how a student can be affected and schools’ legal obligations. 

The guidance also includes information about reasonable adjustments to help students thrive, including ways to:

  •  make tasks that require fine motor skills easier
  • ensure students can speak to someone if they are struggling emotionally
  • help students tackle pain and stiffness in their joints
  • speak to other children and young people to educate them about the conditions to promote understanding and awareness

    Alison says she hopes the guidance will help schools across the UK to understand what scleroderma is and the impact it can have on children’s emotional and physical wellbeing.

    “Eleanor doesn’t need much support, but she does get tired because of the nature of an autoimmune condition like this,” Alison says. 

    “I took her school a copy of the guide to read, which they found extremely helpful. Since then, the school lets her take a break whenever she needs to. Little things like that can help to make a big difference.”

    Sue Farrington, SRUK Chief Executive, said: 

    “We’re so thankful to Alison for helping us develop this guidance for schools. Scleroderma is a relatively rare condition, so awareness is often low.

    For children, the condition often means symptoms that can be painful, time off school for numerous medical appointments and treatments that can make you feel tired or unwell. Many can feel self-conscious, which can also affect their mental health.

    “We hope this guidance will go a long way towards helping all school staff understand the challenges associated with scleroderma and how they can help make school an enjoyable and inclusive experience for everyone."

    SRUK have also created a Raynaud's Guide for Schools, an Employer's Guide to Scleroderma, and an Employer's Guide to Raynaud's.