Sunday, 16 April 2017

Raynaud's Scleroderma, Rare Disease Patient, Seasonal Change- Nicola Whitehill

Most / ALL scleroderma patients will experience Raynaud’s, the narrowing of blood vessels, as a secondary symptom. Raynaud’s can sometimes present as the diagnosing feature of scleroderma, however, this was not the case for me. Tight puffy fingers and intense lethargy along with difficulty in swallowing were my initial symptoms. See more here

Day 4 of my June Scleroderma Awareness Campaign 2016.

Scleroderma initial symptoms: tight, shiny skin; puffy, stiff fingers; extreme exhaustion, Raynaud's, dysphagia
The 1st September is recognised as the change in season, as by, the meterological calendar. Here in the northern hemisphere the season has now changed to autumn, with spring having arrived in the southern hemisphere.

Even though the warmer summer months bring along a marginal easing in some of my scleroderma and raynaud’s symptoms, combined with additional ‘summer symptom’ emergence, my heart still stinks somewhat at the thought of returning to the ‘eskimo months’.

I use this term, as I spend the colder seasons wearing clothes similar to an eskimo. Wearing so many clothes- I have more layers than an onion, with my inner Bond Girl, vanished into oblivion!

I am, however, delighted for my southern hemisphere fellow patients, that they can now start to emerge from their winter hibernation, and in particular, my brave scleroderma patient friend Silvana!

I wrote about ‘The Magic of Summer’, including the added extra scleroderma symptoms seen with an increase in the weather temperature  here

I also discussed in detail the dedication and commitment required, to attempt to keep symptoms at a manageable level in The Scleroderma Olympian. Click here

One of my biggest health challenges currently, is the management of my Raynaud’s involvement. I see colour changes in various body parts should I experience the smallest change in temperature, including my nose, ears, hands, and toes.

The wind can also trigger a Raynaud’s attack for me, as well as, cause severe ear ache which goes all of the way down my jaw line. I have a selection of hats, scarves, balaclavas and gloves in an attempt to minimise any potential Raynaud’s trigger by way of the weather. I wear gloves and Ugg boots all year round.

The most sensible solution for me, is to remain indoors as much as possible. Thereby, avoiding any triggers, by remaining in a cosy / expensive central heated environment. This is my reality. Even indoors, I can experience a Raynaud’s attack by going into a different room which may be a slightly lower temperature.

In 2003, I lived in Fuerteventura in the Canary Islands, for five months, to investigate if a warmer temperature and climate would help improve my symptoms. Which they did, but unfortunately, most places were air conditioned, which makes for a Raynaud’s playground!

When preparing food which has required prior re-fridgeration, I will remove the food from the chiller and then leave it on the counter for ten minutes or so, to remove the ‘straight out of the fridge’ chill factor.

I am unable to hold anything which has come straight out of the fridge, as this would induce a Raynaud’s attack in my fingers. I am not able to hold a glass which has ice in it, although, I do make an exception for a champagne glass filled with Laurent Perrier Rose champagne!

I discussed Raynaud’s prevalence in more detail Day 7

As well as the Management of Raynaud’s and the differing treatment options used here in the UK. Click here

For scleroderma patients, it really is advisable to try and be at the top of your game in relation to Raynaud’s management, as the loss of blood to the extremities during an episode can make scleroderma skin, prone to digital ulcers.

The pain of digital ulcers and their management should be made into an Olympic event for the scleroderma Olympian, as there are no words to describe accurately (even for a professionally qualified advocate such as myself!), the excrutiatingly painful experience, that digital ulcers bring.

Thankfully, due to diligent discipline on my part combined with bosentan 125mg twice a day, continuously since October 2012, I no longer experience digital ulcers with the frequency and severity which I used to. Believe me, the experience makes you want to make sure, that you do not make yourself susceptible to ulcer heaven. See Day 9 

 Also -  Day 24 

One of the few highlights of my scleroderma and raynaud’s patient experience has been to be a member of the team who compiled the NHS England guidelines for the management of digital ulcers. See more here

Sadly, there is currently no cure for either raynaud’s or scleroderma. The treatment options target symptom suppression only, as the cause still remains a scientific mystery. Although, stress is recognised as an inducer of Raynaud’s.

To view:

the UKSSG management of digital ischaemia in scleroderma click  here

the UKSSG Management of Raynaud’s in scleroderma click here

the UKSSG Digital Ulcer Management recommendations click here

The fact that Raynaud’s can be seen in other autoimmune conditions, as well as present on its own in patients with no autoimmune involvement, shows that its commonality can be maximised for global research investment and improved treatments, for all of the affected patient populations.

Being house bound due to severe Raynaud’s, is certainly no easy feat for the scleroderma Olympian. ……Living the dream, scleroderma style, hoping for a cure soon.

The hottest day of 2013, wearing Ugg boots and gloves to minimise Raynaud's attack - Nicola Whitehill

An edited version of this article was written and published in my Column with Scleroderma News September 2016

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
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'My skin is cured from Scleroderma' 19 years post diagnosis, 1997, aged 24, Nicola Whitehill

April 2017.

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