Saturday, 18 October 2014

Please Read: VERY Important Article on Topical Steroid Addiction

Here it is folks! The document we've been waiting for! Get your printers at the ready, because you are going to want to print this one off for your doctors.

Many, many thanks to fellow blogger Tommy, who has always been ahead of the curve with TSW news, as she tells us the latest information from Japan, which is way ahead of the West in recognising and treating TSW. Japan is home to the Sato doctors and Dr Fukaya, who are renowned experts, having treated many thousands of patients with TSW. Tommy has helped bridge the gap by translating and linking to many important Japanese documents and websites about TSW and I consider her blog one of the most important TSW resources available.

Today, she provided a link to a brand new document about TSW which has been written by the Sato doctors and Dr Fukaya. It explains TSW simply and also has photos of healing, as well as guidelines for treatement. As the NEA is mentioned in the document, I am hoping that this is going to be utilised by the NEA task force on Topical Steroid Addiction. This gives me great hope as to the outcome of the task force, as the document provides definitive evidence that TSW is real. I also liked the fact that the document includes pictures of the "red sleeve", one of the defining signs of steroid addicted skin.

The article is fascinating, but also surprising. It challenged many of my perceptions about TSW and may not be without controversy in the TSW community. For example, the doctors suggest systemic (oral) steroids as a treatment for TSW. They also suggest that steroid addicted people may only make up 12% of the eczema community and they base this figure on verifiable studies. It is also interesting that the tone of the document is not anti-steroid in itself, as the doctors state that topical steroids can be a useful treatment for eczema when used properly and short-term in non-addicted patients. Lots of food for discussion and debate then!

In my view, the article has positives and negatives, but mostly positive. It shows that TSA is real and provides photographic evidence, so refutes the argument that the ITSAN people are a bunch of crazies. It also shows that skin can return to NORMAL after stopping steroids. Hurray! On the negative side, I think that naysayers might latch on to the 12% figure and argue that TSA is rare. We will have to wait and see.

I'd love to know what my blog readers think of the article, both the positives and negatives, so please feel free to leave a comment at the bottom.

Thursday, 16 October 2014

West Midlands Hedgehog Rescue

And now...as they say...for something completely different!

Yeah, yeah, I know this blog is all about skin and eczema and TSW, but I want to share my hedgehog story with everyone and this blog (with its almost 500,000 hits) would seem the logical place to do so.

So...my story started yesterday, on a wet, dull Autumn day. I was in the house, homeschooling my little one, when I saw my neighbour dash past the front window and then crouch next to my lawn with her phone, taking photos of something in the grass. On closer inspection, I could see it was a tiny hedgehog.

I went out to take a look and my neighbour said that she ran out because some magpies were attacking the hedgehog. The hedgehog looked really small and sick and was covered in big grey ticks. I went inside to get a box to put it in and popped it inside my shed.

I phoned the local hedgehog rescue, WMHR, and the lady, Joan, was very helpful. She told me to feed the hedgehog and give it something warm to lie on, which was critical in keeping it alive. I used an empty plastic pop bottle, which I filled with hot water and wrapped in a towel. The hedgehog loved the warmth and snuggled up to the hot bottle. I later found a microwaveable wheat bag, which was even better. I also gave her some cat food, which she gobbled up; an encouraging sign.

I spent the rest of the day nursing the sick hog until my husband got home and we drove it to the rescue centre. Joan was lovely and clearly cares very much for these little creatures, sometimes getting up every 2 hours in the night to bottle feed the babies. She said our hedgehog was very sick and underweight and would have died without intervention. At this time of year, they should weigh 600g to get them through the winter, but ours weighed a mere 260g. She said she would keep our hedgehog warm in her house and pull off all the ticks (very brave!) and also give her antibiotics to help her get well.

I was so worried about our little hedgehog, I was actually scared to phone Joan the next day because I thought it may have died in the night and I would have broken my heart over it. Luckily, she'd survived the night thanks to Joan's love and attention and had also had most of her ticks removed. She was eating well, so her prospects looked good.

I'm so grateful to Joan and people like her who sacrifice their time to help little creatures, so I thought I'd give something back by letting people know about WMHR on this blog! Please visit the WMHR website, where you can find links to Joan's Amazon wish list and also their paypal info (friendsofwmhr@btopenworld.com) It would be great if my blog readers could donate a few pounds or dollars to their cause, or maybe buy some much-needed items off the Amazon list.

PLEASE- if my blog has helped you in any way, please donate a few pounds to the hedgehogs and help save my baby hog and others in the same situation. Help the hogs!

*Also, if you want to help WMHR for FREE, you can vote on the ARK website where they are giving away free food to hedgehog charities and you just have to vote for your favourite. So vote for West Midlands Hedgehog Rescue and the site will send them some packs of free food. Cool huh?

Monday, 13 October 2014

I Got Censored by a National Newspaper

Yes. It seems that despite my mild-mannered exterior, I am actually mad, bad and dangerous to know.

A national newspaper saw fit to silence me yesterday. I now must take my place on the list with other notorious banned and subversive authors.

The comment was in response to an article on the Daily Telegraph website. It was about a doctor who has allegedly had great success treating his patients with a "miracle cream" containing a mixture of steroids, antibiotics and moisturisers. Worried mummies slather the steroid cream on their precious babies and the rash "magically" goes away. Yeah. Been there, done that...

I'm sure you all want to see the comment that got me into trouble, right? I bet you are all thinking it must be something REALLY bad, huh? Ok, here it comes...shield your eyes if you are sensitive....

This therapy may work short term, but long term it could be a recipe for disaster.
Patients are wising up to the dangers of topical steroid addiction, with the NEA due to publish a report on the subject in the coming months.
Google "topical steroid addiciton" and visit itsan.org if you think you may be affected by this condition, which can resemble eczema.

That's it. Well, obviously, mentioning ITSAN is SOOOO controversial it must be deleted straight away! Whereas it's fine to endorse using steroid creams on babies, it seems. Mad world.

I checked the Telegraphs guidelines for moderating posts to see what grounds they had for deleting my comment:

What do you remove?
The main types of content that we remove are:
a) Personal abuse. Criticising an argument is fine, attacking the person making it is not. In other words, you can say a person’s argument is idiotic but don’t call them an idiot.
b) Legal. Libellous comments, that is those that make defamatory claims about people, will be removed as soon as we become aware of them.
c) Racist, sexist and homophobic material and comments likely to incite religious hatred. This should be self-explanatory. Generalisations about entire groups of people are never sensible and, in some cases, may be illegal.

Well, I clearly didn't breach any of those guidelines. What did I do wrong here?

During the short time that my comment was up on the site, I was subject to a barrage of anti-itsan abuse, so I'm guessing the removal of my comment had to do with someone complaining about it. So much for freedom of speech then.

Here is an example of someone who I must have upset:

"itsan is doing more harm than good. I'm a medical student and we've already been seeing an influx of patients who are coming in and refusing to take treatment because of bad information being spread around by that website. Steroids are a very effective and safe treatment. Most all individuals who think the have TSW do not. itsan is not run by doctors or medical specialists. 
I am not familiar with Dr **** but from what I'm reading above, his method makes a lot of sense and I'm betting it's far more effective than TSW - which consequently, is usually not effective at all."

Well, I am glad to see that people are coming in questioning steroid treatment. It won't hurt the medical students to think on their feet and come up with suitable alternatives instead of the old "magic" steroids. As for the comment that steroids are safe, just take a look at the many pictures on my blog and others. Look at the amazing "before and after" pictures on the ITSAN gallery and decide for yourself whether TSW is ineffective.

I'm sad that Telegraph removed my comment, but recognise their right to do so. The only reason that I post comments on sites like that is because it breaks my heart to see kids slathered with steroid creams, knowing the damage that long-term use of these dreams can do. But not everyone wants to listen and that is their choice. 





Thursday, 9 October 2014

Topical Steroid Withdrawal on Youtube

I was on the ITSAN forum this morning and I read that there are now about 200 videos on Youtube documenting steroid withdrawal. I'm impressed!

Recording a video of your symptoms is incredibly brave. In fact, I've thought about doing it many times, but have just felt too self conscious about the whole process. I find it hard enough to post the photos, so a video would be really hard for me, as I'm very insecure about how I look.

However, there are plenty of brave souls who HAVE posted videos, so I thought I'd link up to a few of them so that you can see the best of what the web has to offer.

I will start off with the brand new ITSAN video, which features short interviews with those affected by TSW. Some are healed, some are caregivers, and some are still going through bad symptoms. Its remarkable how alike we all are:
 
 
 
...also, for anyone who hasn't seen it, I thought I'd post ITSAN's information video too.
 

 
Most of the videos on steroid addiction are user-generated. One of our ITSAN forumites, George, is hoping to make a documentary about topical steroid withdrawal. If you would like to take part, please go onto the itsan forum and check out the "Documentary" thread. In the meantime, here is a video that George posted about his steroid-dependent eczema:
 
There are so many videos on the web, so if you enjoyed watching these, then go onto Youtube and
 search for "Topical steroid addiction" or "Itsan". There are also some great videos of healed people, like Nina Sloane and Rochelle.

Again, many thanks to the people who have gone to the trouble of posting these videos so that the world can see the damage that steroids do to our skin.


....AND FINALLY!!!

a VERY brief video from me to thank everyone for their hard work!

video

Monday, 6 October 2014

Salcura to the Rescue Again!

A couple of months ago, I reviewed some of Salcura's lovely skin products. I found them ideal for my TSW symptoms, as they are all natural and very soothing. My current go-to item in the range is the Face Hydrator, as it seems to be helping me stave off the October flare, as well as preventing me drying out during the cold windy weather and central heating.

I was glad I had these items in my arsenal, as I had a very unexpected occurrence a few weeks ago and Salcura came to my rescue. My youngest child, who has never had eczema before, suddenly developed a harsh red rash on the back of his hand. He has never used steroids in his life, so I knew it was a case of finding the trigger and treating the rash.

As to the trigger, I realised that the cause was some hand wash that was in the bathroom. I am usually quite fastidious about avoiding products with nasty chemicals, but this one had slipped through the net, as it was on special offer. I removed it immediately and replaced it with one of my usual soaps.

Trigger removed, I went about treating the rash. I used the Salcura Bio Skin spray, but my son complained that it stung. The next morning though, he was dancing around and showing me his hand. The rash had faded substantially and he said the spray was magic. I repeated the routine over the next two nights and the spray didn't sting any more. After that, the rash had completely vanished. I couldn't believe how effective the spray had been at eradicating the sore red rash. So many people in a similar situation would go to the doctor and get steroid creams. My experience shows that you don't have to. There is another way:

Find the trigger. Treat the rash. Don't resort to steroids!

Now for story 2. My oldest son is a teenager and thankfully doesn't have eczema at all. He does have a problem with greasy skin and spots though; a common problem for kids his age. I had been buying him products to treat the condition, but was worried by the fact that they seemed very harsh on his skin.

Salcura to the rescue again...

It was about this time that Salcura re contacted me and asked if I'd like to review any products from their award winning Antiac range. As my skin is very dry and reactive, I knew they wouldn't be right for me, but suggested that my son could try them and give his feedback.

A short time later, three products arrived in the post:

The first product was the Antiac Wipes. The wipes made it really easy for him to get into the routine of cleansing his skin. Boys can be lazy about things like that, but grabbing a wipe and rubbing it over the skin is easy enough to do. He remarked that the wipes felt nice and fresh on his skin and it felt like they were deep cleaning his skin and were fresh and tingly,

The second product was the Antiac spray. I've tried the eczema sprays, so I knew this one would be a winner. He sprays it onto his hands and strokes his hands across his face to soothe the angry skin.

The last item was a gel serum designed to target specific problem areas. It was easy to apply and comfortable to use. It helped to fade the spots quickly.

Did they make a difference? Well, he has been using them for several weeks and his skin looks a lot calmer. The spots haven't gone away completely, but they have faded a lot and he is less self conscious about his skin. I feel happy about buying from this range again, as I know it works.

The Antiac range contains all natural active ingredients and is available from the Salcura website, Amazon and some high street retailers. Salcura will let you try out samples of the items for free and will also give you your money back if you are dissatisfied with the products for any reason.

Friday, 3 October 2014

Man in Canada Has Bad Reaction to Steroid Cream

I know this news item is doing the rounds on some of the TSW blogs right now, but I thought I'd add a link for anyone who hasn't seen it.

The story is about a man who had an allergy to an ingredient called propylene glycol, which is a common ingredient found in many cosmetic products and a known irritant. He developed a rash and was prescribed steroid creams. He used them for two years and developed a worsening rash on his face when he tried to stop using the creams; classic rebound.

The sad outcome of the story is that the man is now on an ORAL steroid to treat the symptoms of his TSW.

I hope he manages to find Itsan.

Thursday, 2 October 2014

Flare Over and Feeling Optimistic!

Apologies to all of my lovely readers.

I've been getting a lot of sympathy messages following the last lot of pictures I posted of my late flare. I hadn't got round to updating the blog and the pictures were up there for too long! That flare was short, sharp and nasty, but it disappeared as quickly as it came. Thankfully, it only lasted a few days, although my lazy blogging has made it seem like longer.

So let's put things right with some new photos...

I just took these 5 minutes ago.

 
...so if you compare the picture of my face with the last ones, you can see the flare has gone right down. My cheeks are still a bit pink, but hey, I'm not moaning. I'm happy, even if I'm not smiling in the photo!

 
Hand is normal. Nothing to see here!

Leg is normal. I tried to twist it a bit so you can see the inside calf is completely white. When my TSW was bad, it was bright red before, with scabs that wouldn't heal. It looks great now. Normal skin.


So the only place without normal skin at this point is my face and to a lesser extent, my neck. The rest of my body is normal skin, so happy days!

Let's remember that this is OCTOBER and I usually flare like mad in October. Take a look at my previous October photos to see what I mean: October 2013 and October 2012. Yukky.

Those previous Octobers were really dark days for me. It makes me feel a bit sick to look at those old photos now. I have come a LONG way.

Here in the UK we are having a very mild Autumn thus far and I haven't had to put the central heating on. I think this has made a big difference, as well as the fact that it is still quite sunny and I can get outside and soak up some rays. I've also been taking Wynter's advice and dosing up on the vitamin D3. I have no idea whether it is responsible for my good skin right now, but I'd like to think so. Judge for yourselves.


...so yeah, it's all good right now, but obviously we have a long winter ahead of us, so I'm hoping my skin stays happy and that I'm on the final stretch now.

TSW is a blooming long process.