TSW Rollercoaster Ride from Concerning "O" Level Exam Room to Graduation Gown Glory

Yesterday, my daughter Cheerry graduated with a diploma in Early Childhood Development & Education. We are extremely proud of her!

As you read in her previous articles, her skin condition worsened since secondary school, causing immense challenges. Luckily, she still managed to complete her "O" level exams.

Her doctors and dermatologist were concerned about her ability to take the exams, particularly due to fainting spells and multiple hospital stays related to her skin condition. They wrote letters to the school requesting accommodations. As a result, she was allowed to take the exams in a separate room and granted additional time if she needed to scratch, a privilege she did not utilize.

Afterward, she began Topical Steroid Withdrawal (TSW) in August 2020. Her diploma journey was marked by two necessary deferrals for a total deferment of 10 months due to the severity of her condition:
1. October 2020 to April 2021
2. June 2021 to October 2021

Consequently, instead of graduating with her first-year classmates last year, she had to graduate with new classmates this year due to the one-year deferment.

We were grateful that she began TSW during the COVID-19 pandemic when online learning was implemented. This was incredibly helpful because her condition sometimes made it difficult for her to go out. She battled relentless itchiness, pain, and sleeplessness, which made it hard to concentrate – especially during body detox, when the itching intensified between midnight and 3 am.

Our greatest wish is for her skin to graduate from TSW too. However, due to the many types and amount of steroids, Protopic, and immunosuppressants she used previously, Dr. Jay from the Skin Health Centre advised that a full recovery (100%) might not be possible.

Dr. Jay had already educated us, based on his knowledge, that my daughter might experience several cycles of TSW. He explained that recovery wouldn't be linear, but rather a rollercoaster with ups and downs. However, he reassured us that her skin is getting stronger with each cycle. This means future flares will likely be less severe than the first one, and her skin will recover at a faster pace.

It's like different types of exams in school; she and her skin have bravely faced multiple flares of severe intensity since 2020. Through online TSW support groups, we learned that anniversary* flares are common among TSW warriors:

1. Jun 2021 (bad 1st-year anniversary flare)

2. Mar 2022 (bad flare)

3. Aug 2023 (minor anniversary flare)

Here are some videos that document Cheerry's experience with TSW during severe flare-ups. While the visuals may be intense, they offer a firsthand perspective on the condition. Viewer discretion is advised.

It was interesting to learned that many warriors experience flares around the anniversary of their steroid withdrawal. This could be due to a few reasons:

• Cellular Memory: While the science is still emerging, some theories suggest the body's immune system might have a heightened response around the anniversary, "remembering" the previous reliance on steroids.

• Incomplete Healing: Even if the skin appears improved on the surface, deeper healing processes might not be complete. This underlying vulnerability could manifest as flares around the anniversary.
  

• Trigger Stacking: The additional stress of an anniversary, combined with other potential triggers (diet, stress, etc.), could push the body over a threshold and cause a flare.

We hope that sharing Cheerry's story offers understanding, hope, and a sense of community to others facing the challenges of TSW. While everyone's journey with TSW is unique, increased awareness can potentially lead to earlier diagnosis and milder experiences.

We eagerly anticipate and pray that Cheerry and other TSW warriors will graduate from TSW with an 88% recovery or more!