Alison's Story of Localised Scleroderma

Scleroderma is so rare that not many families have experience of it, but there are other people out there who understand what you are going through. I feel it is crucial to know that you are not alone in this journey, and I want to help.

My daughter Eliza was diagnosed with localised scleroderma at the age of four-and-a-half, but it took 14 months to reach this diagnosis. I first noticed the symptoms shortly after her third birthday, but she was repeatedly misdiagnosed as having a fungal skin infection. As we continue to raise awareness, hopefully diagnosis rates will improve.

Eliza has what I would call generalised morphoea, with multiple patches of discoloured, thickened skin around her body. When she was first diagnosed, she had to miss quite a few school days to attend appointments and because of treatment side effects, but now she typically misses just one day every three months to see her consultant. She also initially struggled with her medication, as she was given methotrexate which made her feel really unwell and tired. Now she has changed to a different drug that agrees with her more.

My youngest daughter Eleanor was diagnosed aged five in 2018, which happened much more quickly. The first signs of the condition were similar in both my girls: Eliza had bruise-like marks under her arm and on both hips, and Eleanor had similar areas that appeared on both her ankles.

Today, Eleanor still struggles with hospital appointments, and often refuses her medication and misbehaves in the lead up to taking it. Her patches are much smaller than Eliza’s, and mainly appear on her ankles, legs, torso, and arms. She was diagnosed with autism in 2021, and she also has sensory processing disorder, so things can be more challenging for her. We have been attending the medical day care ward at the hospital for her blood tests following a recommendation from a psychologist, and this has helped. In my opinion, there is a definite correlation between stress, anxiety, and disease activity in this condition.

As their mother and their main carer, it has usually always been me that has attended their appointments. For us, I feel this works well because I know them, I know their skin and their symptoms; and I have come to know the doctors as well, so it gives us some consistency. I can be confident that I have given all the information and I also feel that I have taken back some control, which helps with the associated anxiety as well.

I have also had to arrange for an Individual Healthcare Plan at school for Eleanor, which has been another challenge. I had to keep fighting to get this put in place, and I did need to appeal. When Eleanor started a new school in January, they knew she had scleroderma but had never heard of it before. But if schools don’t know about scleroderma, how can children get the support they need to thrive in that environment? Having the school understand the physical and emotional effect this can have on your child is crucial.

Eliza is now at secondary school and typically misses one day every three months to see her consultant. She has a tendency not to ask for help 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 I had to speak to the pastoral team so they could keep an eye on her in case she’s feeling tired or in pain.

In February 2013 both girls came off their medication, so now we are just monitoring their skin closely, and so far, things are good!

As a parent, it’s important to gather the information you feel you need, and I have found that social media and support groups can be very useful. Always remember however that this is not medical advice so do not take it as fact; always consult a healthcare professional for any medical queries you may have.

The information from SRUK is always a good starting point. However, it can be very helpful to get other people’s perspectives on your own situation. When Eliza was first diagnosed, we were not given a lot of literature from the hospital; I think I was given information for adults on one occasion, when she was four-and-a-half. My advice to other families starting on this journey would be to make sure you are as informed as possible, and don’t be afraid to speak up.

Alison has supported SRUK in producing ‘Scleroderma: A Guide for Schools’ - an information booklet about how schools can support students with scleroderma. It covers what the condition actually means, how a student can be affected and the school’s legal obligations.

It also includes information about reasonable adjustments a school could offer that could help, such as:

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