Preventable: Protecting Our Largest Organ
is the first ever TSW documentary produced back in 2019. She will always be my largest accomplishment while still heavy into my own withdrawal, and hopefully a beacon of light to anyone who has been touched by Topical Steroid Withdrawal Syndrome.
What is she about? Glad you asked.
She is about all things Topical Steroid Withdrawal, an *iatrogenic condition brought on by the overuse or overprescription of topical steroids. She is a highlight of stories from patients, caregivers, and family members who have been affected by this condition, as well as a resource for medical research and medical voices who were willing to speak out for the cause.
*iatrogenic: illness caused by medical treatment
Below, you will find time stamps for your convenience.
0:00 – 3:00: About myself
3:00 – 4:30: What is Eczema? How did steroids come about?
4:30 – 6:45: Photos/video of my withdrawal
6:45 – 10:20: More about the mechanism of steroids
10:20 – 13:10: What is Topical Steroid Withdrawal? What is Itsan?
13:10 – 18:10: What we go through as patients in the doctor’s office
18:10 – 20:20: Doctor delivering how he lies to patients about steroid use
20:20 – 21:00: Where we turn for community support
21:00 – 26:30: Janelle’s story
26:30 – 30:40: Nina Ajdin’s story
30:40 -34:30: Steroid Classes/Steroid prescription
34:30 – 37:30: Doctor responsibility/Doctor Burn out
37:30 – 39:25: How TSW may not be “rare”
39:25 -41:00: FDA/Accountability
41:00 – 46:00: Parent struggles/Child Protective Services/ Financial burden
46:00 – 47:20: Steroid phobia
47:20 – 49:20: Rhett’s story (Kathy Parent)
49:20 – 53:30: Morgan’s Story (Dana Parent)
53:30 – 1:00:40: Emotional Toll of TSW
1:00:40 – 1:04:50: Suicidal thoughts/ Relationships ending
1:04:50 – 1:10:00: Japan with Dr. Fukaya and Dr. Sato/ Dollars for Docs
1:10:00 -1:14:25: India with Dr. Lahiri/ Social issues with having eczema or TSW
1:14:25 – 1:20:40: Dupixent and Immunosuppressants (orals and ointments)
1:20:40 – 1:23:45: Dr. Li and Traditional Chinese Medicine / T1 and T2 explinaiton
1:23:45 – 1:28:05: Goals for TSW progress in the medical community
1:28:05 – 1:30:05: Cara/Nina M/Laura highlight
1:30:05 – 1:32:40: Hope and perseverance
1:32:40 – End: Where everyone is during 2019
Why Was She Made?
Awareness
Topical Steroid Withdrawal Syndrome is still such a taboo topic. Many still have no idea what it is, that they are experiencing it, and how it can completely tear a person apart. Topical steroids are the first line treatment in dermatology, a drug many eczema and psoriasis patients use on a daily basis.
90% of TSW patients come from the eczema camp. They deserve to know what their most used treatment could possibly do to them.
Validity
There may not have been much research, but it was there. In 1979, we knew topical steroids had the potential to severely damage a patient’s health, yet a blind eye was turned. Patient stories of their fight through withdrawal are meaningful, but it’s the voices from within the medical community that solidify the reality of this iatrogenic condition. This documentary showcases some of the most knowledgeable doctors who have first-hand experience with Topical Steroid Withdrawal Syndrome. They prove that the research is valid and that we, as patients, are justified in our outcries for reform.
Hope
You are not alone. There is healing. Sometimes it’s not perfect (hi, Bri here…), but there is an uplifting end in knowing that we are not crazy. We have a community of beautiful souls who are taking a stand in order to ensure that this doesn’t continue to happen well into the future.
Is She Still Relevant?
Heck to the yes.
These harrowing stories will never grow old. Each one will live on, touching the lives of many who are either just finding their footing through withdrawal, have been in it for the long haul, or have been a loved one trying to navigate how best to be supportive. No amount of time will change the significance of the bravery each person shared in stepping in front of a camera and sharing their story.