Hello Friend!
This past week I reached a major milestone of particular personal significance that I wanted to share with you all - that, and some really encouraging news on behalf of our cause!
June 7th of this year marked the 7-year anniversary of my entering into Topical Steroid Withdrawal. When I began this journey, it was entirely by accident and at the time I had no idea how deeply this experience would impact and change the trajectory of my life. In the early days, after I had my Aha! moment while visiting the ITSAN site, I thought I would be in and out of TSW in a matter of months. However, as is true for many of us, my health went from doable to debilitating in those first months with no end in sight. No longer could I function as a wife or mom or friend. It wasn't long before the condition of my skin, nerves, and the crazy level of pain and itch left me living between my bed and my bathtub. I don't have to explain all the gory details—those of you who have shared in this suffering know them already.
I have been very blessed with a strong support system and a lot of love in my life. Very early on in my journey, my mom sent me a link to a song on Youtube to encourage me. I watched it in the bathtub on my ever-trusty companion, the Iphone. While listening to the song being played over a video scene of the Alps, in my heart of hearts these words came to me: "One day you will be sitting on those Alps HEALED; feeling the wonderful sensations of sun and wind once again on your skin, nestled in the grass with no allergic reaction, no itching – just pure joy. I held that thought and that vision in front of me throughout many years of terrible suffering. I was bedridden for 1 ½ years. Housebound for more than 2 years. Had to take baths to quell the burning in my skin every morning for 5 years in order to function. Little by little I healed and this past week those words from so long ago came to pass along with so much more!
Back in March, while attending the American Academy of Dermatology's Annual Meeting and the Coalition of Skin Diseases Developmental Day (which ITSAN is a member of), I was approached by Christine Janus, who is the Executive Director of Globalskin (another organization that we are a member of). She told me of their upcoming conference in Milan in conjunction with a symposium on Atopic Dermatitis and asked if ITSAN would be attending this collective effort to support skin disease states from around the world. After telling her that the extra expense was not in our budget for this year, she informed me that one delegate from each member organization would be sponsored to attend. This was an amazing opportunity for us to network with and learn from other patient organizations leaders from around the world, and I was especially interested in connecting with those who represented Atopic Dermatitis (eczema) Associations. Attending was a no-brainer! Only after registering did it occur to me that this event, taking place near the Alps, also happened to land on my TSW anniversary – wow!
I have to say, as I sit here writing while I fly back to the US, I am SO encouraged about what I see happening in the world concerning eczema - the building of a strong global, engaged and supportive community. What an absolutely incredible week it was!!! I heard patient leaders verbalizing, sometimes for the first time, what it was truly like living with their condition. We discussed the stigma, the way our relationships are affected, and the great extent that skin conditions effect our quality of life. I witnessed healing and progress as patient organizations, doctors, researchers, and industry leaders sat together for 5 days and interacted about the things that really matter concerning our community; asking the hard questions, being vulnerable, sharing insights and resources. Participating in those meetings was very moving. I was approached with so many questions about TSW from these leaders – there was immense interest, as many of their organizations are consistently getting inquiries from members. I had a multitude of productive conversations and feel I made good, life-long friends this week, who together will change the future of how skin disease (including TSW!) is recognized and treated.
The cherry on top was a visit to the Italian Alps at the end of the meeting. My son Jackson accompanied me on the trip, and we drove out to the Dolomites to spend a day and a half hiking through the absolute splendor of that place. It wasn't until we walked the trail past the noise of a rushing Alpine river and deep into the stillness of the woods, that the tears lit in my eyes. There was such a mixture of emotions going on inside of me as I reflected on these past 7 years; sorrow, relief, gratefulness, joy… I got my picture sitting in the grass – even laying in the grass – soaking in the moments that were so long in coming.
Sometimes (maaaaaany times, in our case) it feels as though the sun may never shine again. It takes everything in us to hold onto the hope of healing. And then it comes – and the realization dawns on us, we made it. Hold your head high friend, healing takes time, and you are worth the healing.
Kelly Barta
President
ITSAN
Pictured above on right: some of the incredible Eczema Association delegates who attended the Globalskin conference from: Ireland, Australia, Canada, US, UK, Lithuania, Serbia, Slovenia, Holland, Russia, Malta, Czech Rep., Portugal, Peru, and Columbia. |
