It's time to raise awareness of another autoimmune disease, this time it is one that isn't commonly associated with Lupus, although it can be. This is scleroderma, a condition I have and one that I have only recently started to notice at a greater rate. This is one of the diseases that lead to my diagnosis of Mixed Connective Tissue Disease, along with the lupus and Hughes syndrome.
I am actually finding this one quite hard to write about, mainly as I am still coming to terms with the diagnosis. Still within that fear stage, where the unknown is so terrifying it consumes your every waking minute. So please excuse me if I get a little emotional during this one, I am trying to be strong I promise.
What is Scleroderma?
Scleroderma is a fairly uncommon auto immune disease, less common than Lupus and this is one of the reasons it is not talked about much at all. As with many autoimmune conditions, what you read on medical websites doesn't often fit in with the reality on a day to day basis...but here are the details.
Much like lupus, scleroderma attacks the connective tissue within our bodies; in general with this disease this is the skin and blood vessels. The most common and obvious symptom of scelroderma is thickening of the skin, which cause patches to become risen and inflamed across the body. The most common areas fr this are the hands, feet and face. However for me it is my scalp and upper arms - not sure why this is but I want to also note my experience.
Please note I am only talking about systemic scleroderma here as there is also linear scleroderma (just affecting the skin)
Other symptoms include and are not limited to;
- Problems with swallowing - yep I tend to feel like I am choking for no apparent reason.
- Heart burn - I have this one down to a tee
- Hairloss - oh the joy
- Weightloss - you would think this was a great thing, it's not so great!
- Fatigue - oh more fatigue...so much fun!
- Joint pain - as if I don't have enough already
- Red spots on face from blood vessels - I have one so far
- Raynauds Phenomenon - this seems to come with everything.
How is scleroderma diagnosed?
As with any autoimmune condition, scleroderma is diagnosed through blood tests and medical history. The main blood tests that you will need to show positively for are the ANA (anti - nuclear antibody) and the Anticentromere Antibody. Having both of these together will make it strongly suggestive that you have scleroderma.
Along with these and in order to get a firm diagnosis, you will probably need to have X-rays, a heart scan (if there is suggestion of heart involvement), skin biopsy and/or ultrasounds. Eventually your medica history will be used to back up all or any clinical findings. Often the key factor to getting the diagnosis of scleroderma is the skin involvement.
Much like getting to the point of diagnosis with lupus, it can be a long and stressful road. Sometimes our bodies do not want to cooperate with the doctors, not showing up issues that we know are there. The answer is perseverance and I will explain why next!
My journey to getting the right diagnosis.
I first started to notice strange skin spots on my arms many years ago. My parents sent me to the GP who said it was eczema and gave me creams to tackle it, none of which worked. As I grew older the round, scaly skin rash would appear on my upper arms every few months, it didn't matter what the weather was like or how much sun I had had, they would come back. I just accepted them as part of me, they were easy to cover up and although slightly itchy and sore they didn't bother me that much. Sometimes they were small, maybe a couple of centimeters and other times they would be an inch or more.
Sometimes though, the round patches of skin would itch so much they bled, leaving little scars afterwards, especially on my scalp. I remember being about 20 and my head bleeding from what I could only describe as excess skin. This in realty should have sent me straight to the doctor, but with everything else going wrong with my body this was the least of my worries. Also being a 20 year old girl, I was embarrassed of this symptoms, so I just forgot about it and tried to carry on.
It wasn't until the lupus diagnosis, that I had one odd blood test result come back...I remember the letter now...it stated....positive anticentromere although the clinical significance of this is unclear. As with all my results, nothing was explained to me and as this was a new positive, I decided to look it up and that was the first time I ever came across scleroderma, I mean every result that matched the antibody was for this disease. the more I read, the more the pieces fell into place.....I had had my tonsils removed at 13 due to constant sore throats and difficulty swallowing; this fixed absolutely nothing at all. I had the excess patches of skin, I had raynauds....I needed to know for sure. So I mentioned all these things I had kept quiet for years, not holding back and simply asking if this could be it. The issue with this was that I would have to be retested for everything, reassessed and all of this meant more waiting and more uncertainty. I kept pushing though, asking why i would test positive for something that I don't have, waiting for more blood tests and hoping that something would get resolved - I just wanted an answer.
Finally I got it. It didn't make me happy, it didn't make me feel better, but it did give me a fresh start and a new journey to add to my existing one.
What is the outlook...
That is something I cannot answer for sure. All the websites i have visited suggest the outlook is a bright one, as long as the disease is controlled. The medications are similar or the same to lupus, methotrexate, prednisolone and NSAID's.
My outlook shall remain positive however, whether I develop further organ involvement, or the flare up's get worse...I will always remain positive.
