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Have you only just heard of TSW and want to find out more?

Patient Support

Are you suffering from TSW and need advice on how to cope?

Are you a medical professional hoping to understand TSW better?

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scratchthat.uk

Thank you to our friends and fellow TSW advocates

Thank you to our friends and fellow TSW advocates across the pond @itsan.nonprofit for supporting us in our advocacy here in the UK!

ITSAN have been working tirelessly for years in the USA advocating, educating, raising awareness and providing support for a global community living with TSWS

We know that the TSW community will achieve more by working together 🙌

Yellow Card Scheme UPDATE: Your actions really are

Yellow Card Scheme UPDATE: Your actions really are making a difference!

We know activism in the name of TSW can be exhausting. For decades our community has been ignored, gaslit and sidelined, but thanks to all your tireless efforts, things are changing. Of course we’d love to get TSW officially recognised once and for all, and that is something we are working hard to achieve. However it is important to celebrate the little wins, and recognise that change happens bit by bit with lots of small steps.

Thank you to everyone who submitted their Yellow Card Reports, you are our heroes! If you haven’t already submitted your report and live in the UK, we still encourage you to do so. This is because this is an ongoing investigation by the MHRA, and they need to know about every single reaction to topical anti-inflammatories so they can build a better picture of the problem.

Read MHRA’s response to our query and see what your Yellow Card Reports have achieved so far:

> MHRA have consulted with the National Eczema Society UK and the Psoriasis and Psoriatic Arthritis Alliance
> They conducted a search of their database for potential cases of TSW and gathered evidence from other international regulators
> MHRA subsequently raised this issue at the Gastroenterology, Rheumatology, Immunology and Dermatology Expert Advisory Group (GRID EAG), where it was discussed in depth and also included invited dermatology experts and lay members from public charities.
> Experts have confirmed that these reactions occur, although there is limited awareness, and MHRA are currently working on wording to be included in the Summary of Product Characteristics (SmPC) and Patient Information Leaflet (PIL) of all topical steroid products.
> Once the updates have been agreed MHRA will be communicating with healthcare professionals to raise awareness through their Drug Safety Update publication.
> MHRA will work with experts and patient group representatives regarding the appropriate messages for this communication.

Many thanks to @mhragovuk for your detailed response.

The Scratch That team x

In the past few months there has been lots of exci

In the past few months there has been lots of exciting change in the community, from the National Eczema Society releasing a statement acknowledging Topical Steroid Addiction to TSW being featured on BBC news.

To help continue raising awareness about the dangers of topical steroids, we want to encourage the TSW community in the UK to write to their MP to campaign for reform. The British Parliament works on a constituency basis, meaning your MP represents everyone who lives in your area and has to represent you and respond to communication from you. So we've put together a quick and easy template that you can use to contact your MP and let them know that it's time for change.

Find the link to the template in our bio. Once you've sent your letter share a story on Instagram/Facebook and let your followers know that you’ve written to your MP - and encourage them to do the same!

Comment below to let us know what constituency you're in and who you plan on contacting.

If you get a reply we’d love to know!

Love from the Scratch That team x

Callum, 28, UK. 10.5 months TSW Topical steroids

Callum, 28, UK. 10.5 months TSW

Topical steroids started at 7 years old up to about 14, small break with no skin issues until about 18 years old, then started hydrocortisone, up to eumovate, betnovate, dermavate.

I had two inpatient stays in hospital 10 days at a time, one of them on my 18th birthday, I tried 12 weeks of light therapy and 10 months of methotrexate all while I was in TSA.

After the Methotrexate didn't work I googled steroid addiction and found itsan and TSW. I cut all steroids and decided to do NMT from day 1 on 25th June 2020.

I did NMT for 6 months until my oozing stopped, then I moved on to Moisturiser Withdrawal (started drinking what I wanted and showering once a week). I went cold turkey on absolutely everything, I got worse as the NMT kicked in for about 3 months and then slowly started seeing healing between month 3 and month 10.5 (today).

I haven't and will not going forward be using any moisturiser, cream, lotion, oil or paste. I never used immuno creams like elidel or protopic, I also avoided immuno tablets like methotrexate, cyclosporin and dupixent. I didn't change my diet, I was never tested for allergies. Just complete cessation of anything on my skin or skin related.

Of my 10.5 months, 8 of those were spent off work on sick / house bound, I had zero social life except for the Internet, only now is my life beginning to get back to normal.

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We’re so happy to be able to share a healing story! Many thanks @callum_tsw for your submission ❤️

If you would like to share your story, DM us or email hello@scratchthat.org.uk

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