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Update and sun related question, seeking advice.


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#1 nickisboi25


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Posted 28 December 2013 - 04:14 AM

Hi all.


Haven't posted on here in a long time, hope you are all keeping well. As mentioned in my previous posts I have morphea and the last time I saw a dermatologist about it (maybe a year or so ago), I was told it was in the "burnout" stage. It hasn't really progressed since. Maybe it has just a little or maybe my mind is playing tricks on me because I'm so critical over it. It still doesn't give me pain or complications and I know, especially after reading some of the stories on here, that's ultimately the most important thing. So as of this moment in time it's still purely a cosmetic issue.


I'm due to go on holiday in early February to Egypt for 10 nights. It's not going to be exceptionally hot at that time of year, but It's still sun exposure. I'm not particularly looking forward to it, in fact I don't actually want to go. The main reason I'm going is to force myself to go to the beach and hopefully build my confidence up a bit. I just don't know if sun exposure is even something I should be contemplating as someone who has morphea. I can't find any conclusive answers as to if it's bad or at the least non relevant for my condition. I honestly don't want it to get any worse and I'm worried the sun might not be a good idea. As much as I'm not wanting to go to the beach and expose a part of me I'm so uncomfortable with, I know I have to do it for the greater good. I'm so sick of being the person whose held back from living their life to the fullest because of a horrible condition that I'm unfortunate enough to have.


Do any of you have any personal experience with sun exposure or any useful information that may help me?


Many thanks for taking the time to read this and I welcome all replies  :thank-you:

#2 miocean


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Posted 28 December 2013 - 08:27 AM

Welcome back Nickisboi!


I believe this is a great step for you and an opportunity not to be passed up! Although I do not have morphea I have to be very careful in the sun due to anti-rejection medications causing skin cancer. I still enjoy the beach and the sun, but I am careful.


There are hats and clothing that have UPF sun protection that could protect your skin and cover you body. Do a search for hats and clothing with sun protection and you will find a variety of items that might work for you. If you find these are not your style or too expensive, at least invest in the hat and sunglasses. Then go shopping for casual wear and beach clothes that are lightweight and comfortable for you. Even the lifeguards here wear long board shorts that come to about their knees and t-shirts or long sleeve shirts. There are also tops referred to as rash guards that surfers wear here to keep from scratching themselves on their surfboards and keep them from getting sunburned. Many people wear them in the water these days to keep from getting sunburned. I did a search on how to dress for the beach in Egypt but the information I found was for females. It might give you some ideas, though, if you did a search like that.


Have a wonderful trip and please tell us all about it!



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#3 Joelf


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Posted 28 December 2013 - 08:42 AM

Hi Nickisboi,


How lovely to hear from you again and I'm very pleased to hear that your Morphea seems to have stablised for the present.


People with Scleroderma need to be careful with their sun exposure ( and especially if taking immunosuppressants). I've included a couple of links for you to our medical page on Vitamin D deficiency, Sunshine and Scleroderma and an article on Sunlight and vitamin D for bone health and prevention of autoimmune diseases, cancers, and cardiovascular disease  which I hope you'll find helpful and informative.


Obviously it makes sense to be careful in the very hot sun and only subject your skin to small amounts of exposure to begin with.....lobster red with blisters is not a good look!! ;) I take Azathioprine (one of the aforementioned immunosuppressants) and was warned by my consultant when I first started taking it that I should be careful of the sun exposure on my skin and I tend to avoid getting burnt as I've got enough wrinkles as it is!! ;) :lol:


Enjoy your holiday; at least you'll be away from this awful damp, cold weather we're having at this time of the year!! :)


Kind regards,

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#4 judyt


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Posted 28 December 2013 - 02:37 PM

Hello Nickisboi,


My thoughts are to say to you go to Egypt for the experience rather than the sun.  I have been there in the past and the experience is worth more than money can pay for.


I know you say you want to go to make yourself go to the beach and that in itself is an OK reason but don't make it your main aim.   Of course, much depends on the fashion of the moment and who you are travelling with.   If you find yourself with sunworshippers  it is hard to be different, particularly at your time of life, but you will no doubt have heard the old Noel Coward song "Mad dogs and Englishmen go out in the midday sun"!!!   I have lived in England and travelled in Europe so I am aware of how different the climate is there. As far as we are concerned the sun in your part of the world is a gentle giant to be enjoyed whenever it shows itself.


Living as I do in the southern hemisphere we are very aware of the strength of the sun I can only agree with miocean that there are other ways to dress on the beach than being bare chested.


In fact, just recently, on TV I think, I saw a young man on a beach with no shirt and short shorts and my first thought was how unusual he looked.   On reflection I realised that was because we just never see that any more - and I live beach front so see bathers every day.   In our part of the world we have a saying which all kiddles learn.   Slip, slop,slap.   Slip on a T shirt, slop on some sunscreen and slap on a hat.


Go to Egypt in a mood of looking forward to the differences.   The sights, the smells, the markets, Camels and Pyramids.   Locals dressed head to toe with only their faces showing.


Go, enjoy and let us know afterwards how much fun it was.



#5 Amanda Thorpe

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Posted 13 January 2014 - 12:48 AM

Hello Nickisboi


Have a great time on the beach with all the other people who have their own worries about areas of their bodies! We always think it's just us but not so, it's common to have something we don't like but no one else really notices and should someone comment on your morphea/you think someone is looking a little to closely, use it as an opportunity to make conversation. They won't know something is wrong unless you tell them.


Be careful, use appropriate sun factor and make sure any medication you may be on is sun safe (mycophenolate, for example is NOT sun safe). Other than that...enjoy!


Take care.

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#6 nickisboi25


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Posted 01 February 2014 - 02:08 AM

Hi all!


Thank you for your replies. The day is almost here, flying out on Wednesday! I emailed my doctor who happens to have a couple of other patients who have various forms of Scleroderma (what are the chances) and as a result, knows some people at a scleroderma charity. I spoke with them also and this is the advice they both gave me;


Apply factor 50 SPF regularly and it should be ok. There is a chance that the existing Morphea will darken.


Hopefully as my tan fades after, the Morphea will fade back also. If it returns to the light brownish color it is now, that would be good. Thank you all again for taking the time out to reply to my post. I'll put an update on here some time after I get back to share my experience with sun exposure and Morphea. Hopefully it'll help someone else who might have similar questions.


Take care, speak with you all soon  :)  

#7 judyt


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Posted 01 February 2014 - 10:44 AM



Great that you have more information.   Go, enjoy! and we look forward to hearing how terrific it was.



#8 Sweet


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Posted 05 February 2014 - 08:31 AM

It was nice to have an update of you. Enjoy your holiday my friend!

Warm and gentle hugs,

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