My last post was all about making our voices heard and helping to create change.
Well, it seems that at long last somebody is listening. Today I read an exciting post on the National Eczema Association Website.
It states:
"Over the past few years, the National Eczema Association (NEA) has received an increasing number of patient inquiries regarding what has been termed Topical Steroid Addiction (TSA), also known as Red Skin Syndrome (RSS). Dermatologists have also reported patient inquiries on the subject. Posts on NEA social media sites and other eczema channels have grown on TSA, instilling fear of TSA in many, while adding to the confusion eczema patients and caregivers experience. A non-profit group has formed, International Topical Steroid Addiction Network (ITSAN.org), led by dermatologist Dr. Marvin Rapaport, whose mission is to raise awareness on TSA and provide resources to those who suffer TSA.
In response, NEA has formed a Task Force to conduct an in-depth review and create NEA position on Topical Steroid Addiction. ITSAN documentation of patient experiences with TSA has been submitted to the Task Force."
I am really encouraged by this news. If the NEA understand about the dangers of steroid addiction, then ITSAN will have a strong ally in spreading the word to even more people. Not only that, but more doctors and dermatologists would be informed about red Skin Syndrome too.
Two of the aims of the committee are to:
Prepare article/commentary/editorial for publication in dermatology literature.
Produce patient-friendly NEA position statement/video on TSA for distribution on NEA communication channels.
These documents would be really useful tools for patients to share with doctors.
My only slight reservation with the research is the fact that the NEA currently receive funding from some of the big pharmaceutical companies. I sincerely hope that this does not create a conflict of interests when it comes to publishing the final results.
Despite this, I am very hopeful about this development and hope that it signals a new era in the fight to publicise this much misunderstood condition and spread awareness.
Thank you NEA for taking our concerns seriously and best wishes for the success of the project.
7 comments:
You beauty! That's fantastic news. NEA is a big organisation so even if they provide pharmaceutical funded propaganda that red skin does not exist (worst case scenario), at least it will reach a large audience. The fact that they are even talking about it is great in my opinion.��
amazing news!!
This is AWESOME!! Great job to everyone who helped to keep at the NEA and providing the information about TSW.
It is very exciting but I still have reservations about it. I almost have a feeling they're only doing this because there has been such an uproar about the whole thing and that they might just turn round and say the insufficient research isn't credible just like all the derms seem to think. Hopefully they will actually do some good in this and not my case scenario!
Great comments everyone.
I have my concerns too jenny and I have mixed feelings on how the results will turn out given the NEA have strong links with the pharmaceutical companies and rely on them for donations.
All we can do is keep hoping that they will do the RIGHT thing in this instance. They backing on this issue would help so many people, they have a moral right to warn people about the danger of steroid addiction.
Besides, the evidence is pretty hard to deny. I've got about 60 blogs on the right hand side of this page, including you lovely people, attesting to the fact that this thing is very REAL.
You must post this on the itsan form, this is real progress. Doesn't matter what conclusions they come to, it's a start.
I'm still of the thought that a lawsuit is in order. A multilevel attack is needed if we are ever going to get help for us and the rest of the sufferer and more important, those who will never have to suffer at all cause we changed the dogma.
This is great news! I really hope NEA prioritise patients benefits rather than the benefit they gain from pharmaceutical companies. Thank you for the post X
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