Sunday, 16 April 2017

Skin Tests in Scleroderma Raynaud's, Rare Disease - Nicola Whitehill

The skin is the largest organ in the body and more often than not, will be affected by scleroderma, as the name ‘sclero’ - thickening, ‘derma’ - skin, implies. The exceptions are a SINE scleroderma diagnosis, as well as, a limited scleroderma diagnosis, could present with little or no skin involvement. 

Here is a visual from my June Scleroderma Awareness Month Campaign 2016

I wrote a more general article about skin involvement and the skin symptoms which I presented with in 1997, click here

One of the usual diagnostic tests carried out to determine a scleroderma diagnosis is a skin biopsy. Other tests, include those which I discussed here

I am delighted to have avoided a skin biopsy- an invasive painful test on my scleroderma tight sensitive skin, for 19 years now. However, the growing lump on my forehead of the last three years has been a cause for concern and intrigue, further to me being prone to calcium lumps, which is now one of my long term scleroderma symptoms. Although calcinosis is not as life threatening as organ damage, it can be extremely painful and contribute to organ damage. It is my view that calcinosis is one of the biggest unmet needs of the stable scleroderma patient. I discussed in more detail about calcinosis here.

The lump on my forehead appeared as most of my calcium lumps have appeared – pain and tenderness to the skin at the site of injury, and then gradual discolouration to a white-ish colour, similar to a spot. Although, they are actually a lot different to a spot, as spots can be squeezed and these lumps can not, and which, I have hours of experience of squeezing and prodding, and the scars to show for it.

The start of the red lump can just about be seen on this photo which was used for Raynaud’s and Scleroderma awareness in The Daily Mail in 2013. View here

Further to the lump’s appearance I was referred to my local Dermatology clinic for an assessment and measurements to be taken. I was advised at this time, that a skin biopsy would be an option, in an attempt to identify more about the lump. However, due to my years of experience with calcium lumps, I chose to delay any invasive surgery, mindful that my skin does not repair as quickly upon injury, and another scar, this time on my face.

As well as, I am susceptible to infections due to 7 years of immunosuppressant use, even though I am now 12 years immunosuppressant free. Being a long term patient with a rare disease with no cure, and little known about the cause, has taught me that ‘prevention is most certainly better than cure’ especially when it comes to infections which may have been avoided, such as coughs and colds.

My gastro-intestinal system is still in recovery from having to have taken continuous antibiotics for my digital ulcers, prior to taking bosentan, along with the damage to my GI system caused by scleroderma. I wrote about my diet changes here

As I stated above, I really am elated that I managed to get to year 19 of my diffuse scleroderma diagnosis without having to have a skin biopsy. And, I am extremely grateful to the Dermatologist Doctor, Dr Tiberiu Bontea, at Ormskirk General Hospital (my local Dermatology center) for his expertise and patience over the last 18months, whilst I plucked up the courage to have the procedure, as advised from the outset.

On the day of the procedure, I was very much comforted knowing that Dr Bontea had taken into account my scleroderma ‘special needs’ – tight skin and compromised blood supply combined with slow healing tissue repair issues, andso, he used a type of anaesthetic which would not cause extra contraction of my blood vessels (lignocaine).

The medical requirement of this procedure shows the importance and need of a ‘shared care multidisciplinary approach’ for best practice and care for the scleroderma patient. I wrote about the necessity of expert specialist centers here 

The entire procedure took about 20minutes, with only slight discomfort at the point of entry of the needle administering the anaesthetic, lasting a minute or so. Dr Bontea kindly let me look at the ‘specimen’ which had been excised, prior to it being sent for further testing. It did not look like a calcium lump.

I am extremely grateful to Dr Bontea and the nurses for making the procedure as pleasant as it could be. As well as, I am very grateful for my fellow long term scleroderma survivor friend Leyla, for her support, when I was having to accept that the biopsy road was the only avenue available, and of course, Thank You to all of my facebook global scleroderma friends for your comments and support and for sharing your personal experience of this scleroderma ‘added extra’.

This photo was taken at the end of the procedure, and 4days later there is little change. In the meantime, I am under house arrest in an attempt to provide the best conditions for a ‘speedy’ healing recovery. Living the dream, scleroderma style, hoping for a cure.

 This article was written and published in October 2016 for my Column

To read my articles:
  • the importance of an early diagnosis click here 
  • the role of medical research click here
  • the importance of expert specialist centres click here
  • diet and nutrition click here
  • taking part in research trials click here
  • the UK guidelines for management and treatment of Scleroderma click here
  •  my skin is cured from scleroderma click here

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.

Living the dream, scleroderma style, hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld

Please use the icons below to share this article #SclerodermaAwareness
April 2017

No comments:

Post a Comment