Tuesday, 24 March 2015

ITSAN Makes The News

Check out this latest story in the Daily Mail where a brave young lady going through TSW shares her experiences and also mentions ITSAN!

Thanks for raising awareness.

Friday, 13 March 2015

Developing New Eczema Treatments for Children

In an exciting new article on the NEA website the National Eczema Association and FDA hope to address the needs of paediatric patients in the treatment of eczema.

The article says:

" there is an unmet need in the treatment of pediatric moderate to severe atopic dermatitis, and it is time to move forward with a sense of urgency."

Hopefully this will result in the development of new and effective therapies which may be more successful in the long-term than topical steroids.

One boy who was interviewed said:

“I have been to 6 different dermatologists, used over 18 different steroid ointments, done light therapy, and taken oral medicines and nothing has worked. That is why it is so important that you allow testing of new drugs for children. We are suffering every day and we are counting on you to help us get some relief.”

Monday, 9 March 2015

Rock Bottom

Saturday was gorgeous and the sun was out all day. I had a great day outside and it really helped my skin.

Sunday, however, was another matter and it rained all day. My skin went downhill very quickly (like the weather) and was just as wet. The whole of the right side of my face was wet to the touch.

I knew a flare was brewing and I was right. I had a restless night, presumably because of wonky cortisol levels, and terrible weeping skin behind my ears and on my face. It felt like I had acid instead of blood, as it burned a path through my blood vessels. My skin dried to a fine, powdery crust this morning.

So I woke up and look freaky and what is worse, I have to see the asthma nurse today for my yearly check-up and I've a feeling she's not going to be happy when she sees my wrecked-up skin. It's hard trying to explain the virtues of the TSW process when you look this bad over three years in.

Moral of the tale: Don't get dependent on the steroid creams to begin with, because getting off them is a LONG process. If you need regular steroids to make your skin look "normal", then chances are you are already hooked and you have my condolences, the recovery process is hell.

Thursday, 5 March 2015

Skin Update at 39 Months (photo)

The sun is finally shining here in the UK!!!!

I'm expecting my skin to make big improvements over the coming weeks.

I try and get out in the sun whenever I see it shining on the garden. It's a bit chilly out there, but it is worth trying to tough it out for 15 minutes of precious UV.

I've been on the vitamin D for several weeks now. It hasn't made a massive difference in my skin, but it does seem to help me sleep, so I'm wondering whether it may be beneficial for TSWers with insomnia. Honestly, I sleep like a log and feel really refreshed in the mornings since I started the vitamin D.

Anyway, here is a quick webcam photo:
Still a bit blotchy, but hoping to improve soon!

Friday, 20 February 2015

University of Sheffield Study on Stress

Suffering stress because of your skin?

The university of Sheffield are running a study to see if a self-help program can reduce the effects of stress when suffering with a skin condition.

If you are interested in taking part (I just signed up!) click the link below.

University study on skin and stress.

Hope it helps someone.

Monday, 16 February 2015

Never Ending Flare

I've been flaring now since the end of December and things are actually getting worse rather than better. Every night, the skin on my neck and is soaking wet and my sleep is broken. When I get up, the wetness dries to a thin, flaky crust and I can't turn my neck. It stings like acid has been poured all over me.

I was actually looking at my photos from this time last year and my skin was good back then.

What's really sad is that my kids are off school for half term week and I can't do anything with them or take them anywhere because I'm stuck on the sofa in terrible pain. So on top of everything else, I have kids moaning in my ear about how bored they are and how they'd rather be at school!

I also keep getting phone calls and texts from my friends who can't understand why I've been AWOL for so long and probably think I'm avoiding them.

By next week I will have been flaring for two whole months. Unless a miracle happens and the flare ends.

BTW I'm still on the vitamin D and its having absolutely no impact on my skin whatsoever.

I actually have zero optimism today. It feels like I'm just stuck like this.

Monday, 9 February 2015

Making a Tough Decision

Over a year ago, I was being interviewed by a student for a project about eczema. One of the questions she asked me really got me thinking. She asked if, having gone through the hell of TSW, I would ever use steroid creams on my kids. I can't actually remember my exact answer, although I think it was along the lines that I would consider it if I'd tried everything else first.

Like I've said before, I'm not steroid phobic. I'm quite clear about the sequence of events that got me to this point. I was prescribed steroids for eczema and neither my doctor or I were aware of the risks of long term use. He happily filled prescriptions and I happily smeared myself with stronger and stronger creams for over a decade until they finally stopped working and I ended up in TSW.

I'm also a strong believer that steroids only mask symptoms. They don't get to the root cause of eczema. I think it is a better strategy to look for triggers in environment and even diet before embarking on the steroid route.

OK, after having said that, I was faced with a dilemma recently. It's winter here in the UK and my kids all have seasonal eczema in varying severity. My youngest only has patches on his hands and they aren't bothering him at all. My daughter has quite a lot and my oldest, teenage son has it on his neck where it is very visible. The eczema patch is uncomfortable and is also knocking his self confidence. He was surprised when I suggested a steroid cream.

I explained the dangers and the risks. Heck, he can SEE what steroids are capable of when he looks at me! I also explained that if he were to use steroid cream, it must be the weakest OTC, used twice a day or less and  for less than a week. Then stop. No matter how your skin responds, stop nefore the week is done. I've read of people getting addicted in as little as two weeks, so I'm guessing one week is probably OK.

He's been using 1% hydrocortisone for 2 days now and as predicted, the rash is going away. I might actually ask him to stop tomorrow. I worry that if there is a genetic predisposition to TSA that he might be more likely to get addicted to the creams than the average person. That said, we have been extremely careful and weighed the risks. He is old enough to understand the possible consequences of his decision and was happy to try it out. My daughter refuses to use the cream. She says her eczema will go away by itself. Funnily enough, hers looks a lot better today too.

Use of steroids requires balance, knowledge and an understanding of risk. Personally, I know I have no intention of using them on myself, but I don't feel the need to prevent my family from using them in a sensible and controlled way. I hope we have made the right decision.