More From Sufferers

Hey Preventables,

I wanted to make another blog just showcasing some of the things that are being posted in the groups. This PREVENTABLE condition is causing so much pain and suffering. All I wish to do is play a role in ending the overprescription of topical steroids so this pain can end. Please consider donating to this cause either through the project PayPal (preventable.doc@gmail.com), or through the donation link on the front page.

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Way too many of us get laughed at in a doctor’s office. How inconsiderate, especially if we are bringing FACTUAL resources with us written by other doctors.

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This is so much more than a skin problem. Our mental health comes into play and we need all the support we can get.

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Doctors are prescribing these drugs to be used on places the very drug itself says NOT to be used on. There needs to come a point where the “DO NOT USE PAST 2 WEEKS…. unless prescribed by your doctor” needs to be abolished. Just because the doctor says to do it, doesn’t mean the warning on the label goes away.

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I, personally, did two sets of tapering oral steroids. My skin gradual got better on the pills, but as soon as it tapered off, I went right back into this mess.

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How unfair this that? Even when there is proof, a doctor is going to deny it? It makes absolutely no sense.

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So many people who don’t believe in this say they think its outrageous that people are doing this and should go back to the drugs if they are suicidal. When will the thinking start turning towards saving people from this by actually prescribing these drugs correctly/actually finding out the cause of the patient’s problem instead of continuing to endanger patients and call them crazy for ceasing to use a drug that is literally destroying them from the inside out?

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I saved the best for last. This hits home for so many sufferers.

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This is not about bashing steroids. This is about showcasing how overprescribing these drugs are ruining people’s lives in every way imaginable.

ITSAN — Doctor Pages

As many may know, ITSAN.org is the non-profit organization that advocates to help fight against Red Skin Syndrome and stands as a refuge for those who are suffering and have no support. ITSAN stands for International Topical Steroid Addiction Network.

The team leaders, Joey VanDyke (President) and Kathy Tullos (Executive Director), have poured their heart and souls into this organization to help out everyone who is lost and weary while enduring this heartbreaking condition.

One way they give back is by making it as easy as possible for sufferers to advocate for themselves. These woman get paid hardly any money to do full time jobs in order to make this possible.

Kathy went above and beyond and created this detailed, incredibly informative page that we all can show to doctors in order to help them see that this condition is not only real, but should be taken very seriously.

DOCTORS PAGE

Please, use this page whenever you are trying to inform doctors of Red Skin Syndrome. Here is just some of the wisdom found on this page:

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This page should be utilized in every way to spread awareness.

In Our Shoes

I have been wanting to do something like this for awhile. It is just an extremely minuscule snapshot of what gets posted in support groups for Eczema, Red Skin Syndrome, or Topical Steroid Withdrawal.

Many professionals, who are meant to care for a patient, fall (very) short when it comes to speaking about adverse affects with steroids. It is egregious the way some patients are treated in a doctor’s office.

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To be laughed at is already demeaning towards someone who is ACTUALLY trying to inform you of a very serious and highly factual condition, but then, as a professional, negate that it is real… this is where the problem lies. We are told to trust in our doctors and that whenever we have a question or concern, they are who we should be going to. BUT, what if our professionals don’t know it all? Red Skin Syndrome is not a joke and certainly isn’t a laughing matter. To be completely written off and spoken down to while the patient was the one who really knew the truth, is astounding. We should not be having to stick up for ourselves at any medical facility. We are going through enough physically and mentally. Most don’t even try to go to doctors anymore because they are tired of being made fun of when they should be getting the care they deserve and need.

Preventable: Protecting Our Largest Organ will help doctors understand the seriousness behind this condition and how they have it in their power to stop this from ever happening again. 

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“They told me I would have to use this for life.” And we are called steroid phobic because…?

How outrageous to tell a patient that THIS is the only way to help them. It states it clearly on the inserts that this SHOULD NOT be used for long periods of time. To tell a patient that the health of their skin depends on this drug forever is not only an ill educated prescription, but a lack understanding of what these are truly capable of doing.

Preventable: Protecting Our Largest Organ will help disseminate correct information about topical steroids and what they are doing not only on the surface of our skin for long periods of time (even 2 weeks!), but what they are doing to the inside of our bodies as well. 

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Here in lies the problem with Western medicine. They have ONE go to when it comes to skin ailments. Most will stick to that one trick. You most certainly have a chance of getting better without steroids. The problem is that they are taught that only one method, which is meant to help mask symptoms, not offer a healing change towards the cause of your symptoms, works. Now, we do have a few other options, but in my opinion, they are still either so new we don’t have any knowledge on the damage it could also be doing and/or we know the drug is dangerous and comes with risks just like steroids do. But I see in so many posts how doctors asks patients ‘why did you bother coming in if you weren’t going to take the steroids?’ We are paying for their services and care and yet are being treated as if we’ve wasted their time. Perhaps we were hoping for more than just ‘here are some steroids’. It just simply is not acceptable anymore for this to continue to happen.

Preventable: Protecting Our Largest Organ will shatter this opinion of topical steroids are the only method to treat eczema. We have so much new technology and medical advancements that we have the power to truly find out what is causing our skin to lose control. We can test for allergies, irritants, gut problems, stress issues, autoimmune disorders… we can’t go on just nonsensically masking our problems with a medication for long periods of time that can actually cause us detrimental harm in the long run. 

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Again, this type of condescension is not helpful nor is it particularly kind.

Other posts I tend to see are heartbreaking, ones crying out in desperation as to why this is happening to them. They are losing their jobs, their relationships, their family… ALL from a preventable condition.

This has got to end. And we can do it. If anyone feels moved by this project and wants to help this type of suffering, please visit the sponsorship link above for a tax deductible contribution, or visit the donation link above if you do not need a tax receipt. 

Donate Here