Page 43 - Demo

This is Simone*, and this is her story.
What is scleroderma? How did you come to develop the condition? Scleroderma is an autoimmune connective tissue disease that can affect the skin, blood vessels, heart, lungs, kidneys, muscles and digestive system. It’s a rare and non-contagious disease with no known cause. Therefore, I wasn’t able to pinpoint exactly when or why mine started and have no family history of this condition.
What was the diagnosis journey like? How long did it take for doctors to discover you have the condition? Fatigue has been something I’ve experienced since my teen years. In the lead-up to developing scleroderma
I’d also been struggling with irritable bowel syndrome for many years. At 27,
I began to develop some new symptoms that I hadn’t previously experienced, including severe reflux and losing complete circulation to some of my fingers, toes and underneath my feet. The loss of circulation and numbness was making it difficult and painful to complete simple tasks, from typing,
to getting a bank card out of my wallet, to holding a cold drink or washing my hands in cold water. I consulted my GP to see if this was ‘normal’. My GP had seen these symptoms before and said it was probably nothing serious but could indicate underlying health issues, so she sent away for some blood tests.
It was a big shock to both of us when my blood test came back with the indication of an underlying autoimmune condition, and something I’d never heard of. I was then referred to a rheumatologist who confirmed my diagnosis – limited systemic scleroderma at age 28.
My diagnosis only took two to three months from my initial query. I was extremely lucky to have a GP who’d managed scleroderma patients before and knew what to look for. I’ve heard of it taking years for others.
How is the condition typically managed?
Every case is unique, and management depends on what symptoms
you experience. I currently see a rheumatologist and have yearly blood, skin, heart and lung tests to check if it’s progressing. In my case, over the years I’ve identified food sensitivities and
By Margaret Mielczarek.
manage my gastrointestinal symptoms through a modified diet, as well as medication for reflux if it’s flaring up. For Raynaud’s [a condition that is often the first sign of scleroderma] I feel one of the best things someone told me was ‘keep your core warm’. Before this, I’d been mainly focusing on covering my hands and feet and amassing quite the heat-pack collection. When I really layer up around the core of my body,
I find it can shorten the duration of ‘losing my hands’. I’m still working on how to manage the pain and fatigue, which is the most debilitating thing for me. I’ve found meditation, guided relaxation, deep breathing and gentle stretching and yoga to be most beneficial.
How has scleroderma affected your quality of life? Did the diagnosis have an impact on your mental health and wellbeing? How are you managing day to day?
One of the most difficult things for me
on initial diagnosis was the uncertainty.
I was told to ‘watch and wait,’ and that ‘we’ll treat symptoms as they progress’. There was no clear path forward, no clue as to whether my disease would progress quickly and become life threatening within a few years or stay stable. At 28 I felt like my life came to a halt.
Having a disease that no one had heard of and had difficulty pronouncing and empathising with, along with comments such as ‘but you don’t look sick’ and ‘stop worrying, you could get hit by a bus tomorrow’, meant it had a huge impact on my mental health and wellbeing. I developed a lot of shame about my condition, hiding my struggles and becoming anxious about burdening others. Looking back now, I realise I was going through a grieving process.
It took a few years to reach the acceptance stage, but even now the frustrations of an inconsistent body still get the better of me and I find myself back in that cycle again. In the past eight years, alongside scleroderma (which
has thankfully stayed stable and mild), I’ve developed some other conditions, including fibromyalgia and autonomic dysfunction, all of which have presented their own challenges. Every day is different. Some days I feel almost ‘normal’
and can manage household tasks or go to work or visit friends. Other days feel like I can barely move, have intense pain all over and cannot stay upright.
I left my previous career in healthcare.
I now work two short days a week.
To help manage the physical and mental challenges, I’ve found mind-body therapies extremely beneficial, such as somatic therapy, meditation and yoga, and this has developed into a new passion for me. While taking my life in a direction I didn’t expect, I’m grateful that it’s taught me to slow down, live a simpler, more present life, appreciate the smallest things and have a deeper empathy and compassion for others. And to further give some hope, I also managed to find love with the most beautiful, generous, caring man, while going through all
of this, and am looking forward to our wedding next year.
What should pharmacy assistants know when it comes to scleroderma? What is their role in helping customers who may have the condition?
Educate yourself on what scleroderma is and the different types. I always go into conversations with the expectation that someone hasn’t heard of it, so
if someone knows what it is, they’re already winning. If it’s something you aren’t confident with, that’s OK too.
Ask the person with kindness and empathy if they’re comfortable telling you what their condition is and how
it affects them. Scleroderma affects everyone so uniquely, meaning we’ll all have different needs. A few examples of questions people may have for you as
a pharmacy assistant are for help with managing reflux, management of skin or ulcers, filling prescriptions and questions about Raynaud’s and whether there are any products that can aid with circulation and warmth. When speaking to people with rare conditions, or ones you’re not familiar with, having compassion and a gentle curiosity that makes a person feel seen and heard is important. And if you don’t know the answer to a question, it’s OK to refer them to someone else or tell them you’ll find out for them. Lastly, try to avoid saying ‘but you don’t look sick’.
*Full name withheld for privacy purposes
IMMUNOCARE CASE STUDY 41
Imagine being told at 28 that you have an autoimmune condition and you must ‘wait and see’ at what rate
it will progress. Imagine living a life where one day you’re able to do regular, everyday things, and the next it’s like you’ve been hit by a bus. This is what living with the little-known condition, scleroderma, can be like.
RETAIL PHARMACY ASSISTANTS • JUL 2020