Empowering Ourselves through Volunteer Work

The past 7 weeks have been hard (originally wrote this August 11). But a light at the end of the tunnel started occurring after a BodyTalk session July 30. A long flare turned the corner. Sleep started happening a little bit again – which had gotten pretty outrageous – L was unable to sleep till sometimes, 5, 6, or 7:30AM! Then he had an anaphylactic reaction to milk on Monday, August 5, which ironically seems to have sped up his healing process at a remarkable, warp speed rate (in comparison to normal TSW healing rates!). He is fine now, I’ll do a blog post on that another time.

Today’s post is to encourage anyone going through TSW to find a way to get the word out about TSW. You see, last year, another caregiver mom, Jill, and I attended the Food Allergy Research and Education (FARE) walk that is held in Denver (and other US cities) every year for food allergy families. I knew of the walk and felt it was beneficial for an ITSAN presence due to it being majorly sponsored by National Jewish Health, who everyone in the US thinks of for eczema, food allergy, and asthma treatment. Here’s us with our informational signs and cards we handed out to people.

Jill and I at the Food Allergy Walk in Denver, CO 2013, educating food allergy families on the dangers of Topical Steroids.

This year, with L coming out of a long flare after the one year mark, and then the surprise first time anaphylaxis resulting in not one, but two, epi pen treatments, two ambulance rides – one to the ER and one to the Pediatric ICU for the night – and losing my partner in advocacy to the great city of Chicago, I didn’t know if I had it in me to attend the walk this year. I finally decided I needed to – first to support the great cause (I make a donation to FARE in exchange for getting the table) due to our circumstances this week (the Auvi-Q epinephrine injector saved my son’s life and I found out about it at last year’s walk), and second to not lose a year of awareness for anyone in the Denver area dealing with eczema and looking for answers. I therefore completed my paperwork at 11:48PM Friday night before the walk starting at 8AM the next morning.

When I arrived, at 8:15AM, 15 minutes late since I am still a tired mom who had an itchy TSW kiddo wake up and need me before I left, I got my table. As I’m trying to secure the signs from blowing over, a petite 50ish woman stops and says, “Thank God. You’re here. Finally…[big sigh]” I clarified with a confused, “What?” or something like that. She answered, “I’ve been waiting. My husband died from that stuff. First the skin stuff, then when that didn’t work anymore, prednisone, prednisone, prednisone! All the time. He just kept getting worse, his whole body, his kidneys – they quit and he died.“ “Oh, my, I’m so sorry” I express with deepest appreciation and concern for her story and her husband. She continues, “I’m just so glad you’re here. I’ve been waiting for the day someone tells people about these drugs.”  

Coincidence? I think not. I think that the Universe decided to give me a sign that all the tired and heartachy feelings of late had a purpose. To get me to this walk to get the word out. I know that I met a 40-ish man who he and his wife read the posters and he knows he’s dealing with Steroid Induced Eczema and finally has a cure after living for 8 years on prednisone for a… wait for it… RASH on his FOREARM that… is NOT cleared on topical steroids or oral prednisone! I know that I met a young man who saw that Topical Steroid Addiction/Steroid Induced Eczema is what his step father is dealing with and was going to pass on the information. I know that there were three families with young children who now suspect TSA. I know that I educated at least 100 more families about the risks of topical steroids. I know that a pediatrician for an office in the 5th largest city in Colorado stopped and got the ITSAN information and was going to do more research. I know that another doctor received our information and she talks with food allergy (and thus probably eczema) families all the time. I know that an allergist for a large allergy and dermatology clinic in the area was pissed I was there, yet, said, “Yes, steroid sensitivity, I know all about it” when his friend was chatting it up with me and asked the allergist if he knew what I was talking about.

So this lady’s devastating story of the loss of her husband due to initial topical steroid usage for a rash that continued to get worse and worse and worse was scary to say the least and a travesty on the part of the medical profession that they couldn’t see that the drugs were causing the problem.  And might have been my now 4 year old amazing son had we not discovered ITSAN when we did.  I see children daily whose parents choose National Jewish Health or other doctors who state they will “taper” these drugs for our children, but in the meantime prescribe in what is called an “off-label” prescription practice – under wet wraps, over 20% of the body, more than 1-3x/day, for more than the recommended 2 weeks’ usage. What is truly a problem is that the doctors never inform these parents that these practices increase the child’s risk for serious, adverse, possibly debilitating or life threatening reactions.  And then when the drugs quit working, their doctor’s only response is to switch to oral steroids, or steroid injections, or immunosuppressants used for cancer or organ transplant patients, because obviously, their child is “one of the worst cases the doctor has ever seen”.  

I know that I was meant to be at that food allergy walk, as exhausted and overwhelmed as I was.  My being there made a difference for many.  Not the least of which was for my own mental and spiritual well-being. Making the best of the 14.5 month journey our family continues in supporting our youngest son. Benefiting others so that they may avoid this journey and find one that is a healthier option earlier on.
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So… What are you doing to spread the word about the risks of Steroid Induced Eczema? Some people are writing blogs, for instance: http://beyondtheitch.wordpress.com/; others are posting YouTube videos: https://www.youtube.com/watch?v=bAflPJV-wrI ; some are starting Facebook groups: https://www.facebook.com/groups/848237715204154/; some are drawing artwork and sharing online: http://kimherbst.tumblr.com/post/95604236519/new-personal-piece-that-shows-how-ive-been and http://kbrechtel.tumblr.com/post/86835896978; some are posting the new IMIA symbol in a school mural: https://www.facebook.com/ITSANMIA/photos/pcb.715010991901374/715010671901406/?type=1&theater (see the heart and hands picture); some have started the ITSAN Moms In Action group: https://www.facebook.com/ITSANMIA and http://www.itsan.org/get-involved/itsan-moms-in-action/. (Just a small sampling from the TSW community of people’s efforts to document their TSW journeys.) If you are an 18+ month TSW vet: Please go post your story at ITSAN and check in to offer some words of wisdom or hope!  You are our inspiration and hope for the future!  For other ideas, you can look here: http://www.itsan.org/get-involved/volunteer/. Additionally, you can message me if you are interested in helping the IMIA Moms to complete some of their many, many projects that are being created to help families deal with doctors, schools, other caregivers, and child protective services. It truly is empowering to know that you are helping to prevent more of this from happening.

Feel free to copy, paste, and share this image! One of IMIA’s first accomplishments!