‘Now that the weather is better, you must be better’
This is a phrase which, if I had a pound or a dollar for every time a person told me this, my fundraising efforts for Prof. Chris Denton’s research at the scleroderma unit at The Royal Free Hospital would now have more than reached its target of $1 million, and the cause and cure of scleroderma would have been discovered!
If you live in the northern hemisphere, you will currently be experiencing the middle of summer, and conversely, if you live in the southern hemisphere you will be going through the middle of winter.
Living here in the UK, I have always looked forward to midsummer’s day on June 21, the longest day for hours of daylight in the northern hemisphere.
Sadly, an increase in daily daylight hours combined with an increase in daily temperature is not sufficient to ‘cure’ the daily symptoms experienced by a scleroderma and Raynaud’s patient. Well, not this patient anyway. But the mid summer’s combination is a more welcome combination compared to that which will be experienced in six months’ time, with short dark days along with cold temperatures.
The magic of summer brings a whole different set of symptoms for me, including over-heating and swelling.
For the first seven years of my diffuse scleroderma diagnosis, I took all of the chemotherapies and immunosuppressants available. At the time, I was desperate for my body to respond positively to these disease modifying drugs, to prevent the final option which I was facing. I was actually on the waiting list for a stem cell transplant.
Luckily for me, my body responded to the five-year 2g daily dose of mycophenolate, which I stopped in March 2004 upon completing all of my study and training to become a qualified barrister.
Although I am overjoyed to be immunosuppressant and chemotherapy free for 12 years, the sun now brings along an added complication for me — increased risk of developing skin cancer. I already have a small patch of skin on my left knee which has been diagnosed as Bowen’s disease, and which was responsive to topical treatment but has subsequently reappeared.
NHS England provides the following helpful description of Bowen’s disease:
• Bowen’s disease is a very early form of skin cancer that’s easily treatable. The main sign is a red, scaly patch on the skin.
• It affects the squamous cells – in the outermost layer of skin – and is sometimes referred to as “squamous cell carcinoma in situ”.
• The patch is usually very slow-growing, but if left untreated there’s a small chance it could turn into a more serious type of skin cancer.
To read more on this:
I have also noticed that the red dot-to-dot puzzle on my face, medically known as telangiectasia, loves the sun and becomes bolder and brighter after a few minutes of sun exposure. I focused on telangiectasia in my blog post Day 27 Scleroderma Awareness Month.
The lump on my forehead, which still remains questionable as to whether it is calcinosis or the makings of a basal cell carcinoma (BCC), also loves the sun by becoming bigger and redder upon sun exposure.
I focused on calcinosis in my Day 19 Scleroderma Awareness Month post.
BCCs are thought to be the most frequently occurring form of skin cancer in the US, with or without the added complication of scleroderma. According to Skincancer.org:
“BCCs are abnormal, uncontrolled growths or lesions that arise in the skin’s basal cells, which line the deepest layer of the epidermis (the outermost layer of the skin). BCCs often look like open sores, red patches, pink growths, shiny bumps, or scars and are usually caused by a combination of cumulative and intense, occasional sun exposure.”
For more information on this, check out http://www.skincancer.org/skin-cancer-information/basal-cell-carcinoma.
In an attempt to minimize any further medical skin nightmares, I avoid going out in sunlight for the majority of the day when it is sunny outside. I also make sure that my body is well covered by clothing, including my arms, which have developed “sun spots” over the years. I certainly do not want these becoming bigger due to further sun exposure.
I wear a baseball cap to protect my face, along with big sunglasses and face cream with a high SPF (sun protection factor). I am not proud to be able to liken myself to a character from The Simpsons, (the guy with the long hair, baseball cap and glasses), with my “I have to avoid the sun” look (and with my inner “Bond Girl” having absconded in embarrassment.)
This has required me to make lifestyle choices which I would not have ordinarily made prior to diagnosis, as I used to love sitting in the sun. In 2003, I lived for five months in Fuerteventura in the Canary Islands to see if the sun helped my symptoms.
My body has never been as pale as it is now, after a few years of avoiding the sun in an attempt to minimize any further skin complications.
On the plus side, the warmer temperature certainly makes my skin softer and not as rigid or tight. I still continue with my daily skin care routine by way of bathing in liquid paraffin and moisturizing with a thick emollient — this routine has been in place for over a decade and contributes to my current 95% skin reversal to healthy normal skin.
Read more about my daily skincare routine.
Over more recent years, overheating (yes, you read that correctly – overheating), has become a huge physical challenge for me during summer months. My internal thermometer goes into overdrive with a very small window of warning.
Should I become too hot, excessive sweating will result all over my body, which can cause a rash on my trunk. The medical scleroderma genius Prof. Chris Denton tells me this is due to an alteration in the skin make up in addition to scleroderma symptoms — with an alteration to the sweat glands. I very much hope to raise sufficient funds to sponsor a research student for investigating this further, along with the painful enigma which is calcinosis. Please click on the link to the right of the page to help with this or https://www.justgiving.com/fundraising/sclerodermaunit-royalfree
If I have been too hot throughout the day, later on in bed at night-time I can experience intense Raynaud’s attacks while my body is trying to regulate itself. This is made up of of intense shivering and muscle spasm with my body turning rigid, and takes a while to regulate. Clearly, this is a most unpleasant experience and extremely frightening, and so prevention of such is key and recommended.
I also find that my body becomes more swollen in the warmer months of the year, and in particular my joints, namely knees, ankles, elbows and hands. This makes for wearing feminine skimpy girly summer clothing a ‘no go’ when combined with the skin cancer risk element.
Unfortunately, I am not able to ditch the Uggs and gloves over the summer months. My Raynuad’s involvement is so sensitive that the smallest of breezes could be a trigger, regardless of the temperature. Living in Fuerteventura certainly eased my chronic pain and flexibility. However, air conditioning was everywhere – which although my internal sweating production appreciated this, my fingers and toes would be blue.
My awareness story in The Daily Mail in 2013 features photos of me wearing my Uggs and gloves on the hottest day of 2013.
Here is this year’s update:
One of my highlights of the change in solstice, (if not the only highlight) is that I get together via Facebook with my lovely friend and fellow scleroderma patient Silvana Vidmar, who lives in Australia. We make it our priority to exchange solstice greetings and tips about how to get through the winter hibernation period.
So, although the days are longer and lighter, the plight of the scleroderma patient still continues with a smorgasbord of summer symptoms to negotiate and manage.
Oh and did I mention sleep? Sleep in the summer after a winter of hibernation, is a luxury.
Oh, for the magic of summer…..
Huge thanks to my lovely scleroderma patient friend Sharon Esposito for sharing her creative gifts and for providing such a great image for this post.
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