This month, Amor sheds some light on a rare autoimmune condition called Scleroderma. June marks Scleroderma Awareness Month, so we wanted to introduce you to our “Leading Lady of The Month”…
We met Sarah at our first charity event in May and we spoke with her about the challenges she faces living with Scleroderma. You can read her story below.
Resides in: London
My name is Sarah Jatto and I was diagnosed with a rare autoimmune condition, called Scleroderma, at nineteen years old.
What is Scleroderma? Scleroderma is an autoimmune disease (the body’s immune system attacking healthy tissue) with no known cause or cure. Yep! I’m stuck with it, until my miracle happens.
SCLERO = Hard and DERMA = Skin. SCLERODERMA is a Greek word meaning HARD SKIN.
There are 2 types: localised Scleroderma which mainly affects the skin and systemic Sclerosis which affects the hands, arms, face and internal organs. Unfortunately for me, I was dealt the worst case scenario; Systemic Sclerosis – Diffuse Scleroderma.
It is a life changing condition that is debilitating and extremely crippling; it doesn’t discriminate between age, race or gender.
“She finally opened her mouth and said ‘Sarah? This is serious!’”
My childhood friend Nana and I took it upon ourselves to find my diagnosis. I remember this particular time so clearly; we spent at least a week going through her mum’s medical books matching my symptoms with possible conditions. There we were scouring through pages, moving from sofa to kitchen, balcony to stairs before we finally found what we thought I had – ‘Lupus’. The word ‘lupus’ rang a bell because one of my mum’s friend had a relative with lupus; however, I knew absolutely nothing about. Analysing my symptoms and reading the black ink on the white pages, it was all becoming clear. I turned to Nana and said ‘I think I might have Lupus.’ I didn’t even know what that meant but she did. Her countenance dropped and a look of worry appeared. She finally opened her mouth and said ‘Sarah? This is serious!’
It took around three years to receive the proper diagnosis of scleroderma which has symptoms similar to other autoimmune conditions like lupus.
Prior to my diagnosis, for a little over two years, I had been suffering. First, with my fingers and toes lacking blood flow to the tips; not knowing that I would eventually develop painful digital ulcers (the tips of my fingers would crack leaving an opening). These ulcers became such a nuisance; I had to exercise patience with them because there were no short cuts for getting rid of them. Gloves became my best friend in all seasons – it helped slightly in preventing extreme breaking of my skin. Little did I know that this was the beginning of a long journey with Raynaud’s phenomenon (reduce blood flow in response to cold) and wearing gloves. Cold could mean anything; light winds, air conditioning, a cold room, cold drinks, ice cream etc.
“This is where I met my fate…”
I visited my GP numerous times and she requested I go for a blood test. After my vascular results came back, I was referred to a rheumatology team over at the Chelsea and Westminster Hospital. This is where I met my fate; she’s called scleroderma. I didn’t want to get to know her; she didn’t sound friendly but clearly she wanted to befriend me. I guess I can say a few words about “Sclero”. She’s unpredictable, complicated, stubborn, and wild but thankfully she’s tameable. Funnily enough she reminds me of me (how peculiar) although she’s missing quite a few key elements such as; loving, exciting, funny and inspirational. I could go on forever.
When I was given this diagnosis I didn’t know what to think, how to receive it and, most of all, I didn’t know how to deal with it. It wasn’t anything I had heard of before; I had to ask probably the most common question asked…’Could I die?’ He was extremely honest with me and said, ‘Some have; however, it’s a very small percentage.’ I also asked if there was a cure and he replied, ‘Unfortunately there isn’t but we can suppress the disease and get it to stabilise. This condition is rare and fairly new to us, so as you’re learning we’re learning too.’ Still struggling to make sense of what the doctor had said; I began to notice myself deteriorating gradually and progressively.
Planning days out was non – existent. I could go to bed as bright as day and wake up darker than the darkest hour; I felt grotty, sensitive, tender and completely down and out. As your average teenager I lacked some self-esteem and had insecurities but only after all the ‘sclero’ stuff started happening did I lose it all. My hair thinned and faded; my confidence – zero! My self-esteem: yep! that bolted too and my insecurities – put it like this, I was a long way from feeling secure. Battling with these attributes that somewhat define one’s character began to affect my social life. I really did want to go out with the ladies and hang. I wanted to be a part of the ‘young’ but NOT ‘dumb’ movement but because scleroderma isn’t a straightforward disease, and I didn’t look the same, I had to literally take it one day at a time.
‘If you can’t change it, there’s no point complaining about it!’
A time came when I felt enough was enough and it was time to ‘shake it off!’ I remembered my friend Samuel’s statement ‘If you can’t change it, there’s no point complaining about it!’ It put my whole life back into perspective and I decided to change my thinking. It was high time I changed this negative aspect of life into something positive and stop focusing on living in the now. I started to dwell on how I could improve my lifestyle and future; taking baby steps to reach my ultimate goal, which was to ‘love me again’. The journey I was ready to embark on I knew wasn’t going to be easy. I realised there were going to be plenty of challenges ahead of me; however, I couldn’t allow that to discourage me. Everything I was about to start doing was for a good cause…my cause! I was ready mentally and physically to face whatever obstacles sat in my path.
In May 2015 I decided to open up social media accounts, @meandsclero, on Twitter, Facebook and Instagram. In the summer of 2015 I challenged myself to write a book ‘Me & Sclero’ based on my experiences with battling scleroderma. My aim is to ‘raise awareness and educate the world about Scleroderma’ and I do this through documenting my journey; both the good and the bad.