By Li Yen | Epoch Times Staff
Grace Ng, founder of the Eczema & Allergies – Go Natural Health Champions Support Group, talks about her struggle with eczema and ‘topical steroid addiction’, as well as her efforts to raise awareness about the condition.
At So Clever SG, the Oral English & Writing Classroom in Centropod along Changi Road, we meet up with Grace Ng, founder of the Singapore-based, Eczema & Allergies – Go Natural Health Champions Support Group. At a glance, the petite lady looks just like any other kind and patient teacher.
But as the articulate lady begins her voluble discussion about eczema, “topical steroid addiction”, and how her body took a turn for the worse during her battle with steroids, her resilience and fighting spirit shine through.
According to the non-profit group International Topical Steroid Addiction Network (ITSAN), topical steroid addiction is a condition in which the body develops tolerance to topical steroid therapy— requiring more of the drug to be used to achieve the previous therapeutic effect.
According to its website, itsan.org, “Topical steroids are effective for a period of time to treat the skin condition, but as time passes, however, applying topical steroids results in less and less clearing. The original problem escalates as it spreads to other areas of the body. In the case of eczema, this ‘progression’ is often mistaken for worsening eczema.”
When a person with topical steroid addiction ceases steroid use, the skin “rebounds” from the withdrawal, causing redness, intense itching, burning and stinging. This is known as topical steroid withdrawal (TSW).
“It is actually a drug addiction and a drug withdrawal, except that people don’t really know it,” explains Grace. “We realise that the chance of atopic people getting addicted are higher. And our withdrawal period is longer and more painful.”
Dr Seo Hyo-seok, director of Pyunkang Korean Medicine Hospital, notes, “Although it is possible to fully cure a normal eczema patient within six months through the herbal Pyunkang-Hwan medicine I developed, it will take patients with severe steroid addiction more than three and half years to cure their eczema completely.
“These patients often have very severe detox symptoms and need hospitalization to help them cope. So, I emphasise once again that steroids must not be used under any circumstances whatsoever for eczema.”
Enduring the Stages of Topical Steroid Withdrawal
“That’s no longer genuine eczema. It’s topical steroid-addicted skin. And it’s craving for that steroid.” – Grace Ng, founder of the Eczema & Allergies – Go Natural Health Champions Support Group
During the three years when Grace went cold turkey off topical steroids, she said there was “nothing except pain and redness”.
“My skin was broken from top to bottom, raw, red, and burning,” she recalls.
“Every day [when I] woke up, the bed was bloody, and my pillow would be stuck to my face. I had to peel my skin away from the pillow.”
“That’s no longer genuine eczema. It’s topical steroid-addicted skin. And it’s craving for that steroid,” she says.
Her youngest son, Percy, also underwent topical steroid withdrawal as a baby. Grace says that her son developed topical steroid addiction as a result of her ignorance. Following the orders of Percy’s paediatrician, Grace applied a high-potency steroid cream on Percy when he was four months old, to treat a bacterial infection that came as a complication of chicken pox. She later found out the inappropriate treatment had been prescribed after Percy’s skin condition worsened, as steroid creams should not be used in active skin infections.
However, like other eczema patients, Percy developed topical steroid addiction over the one year that she applied the steroid cream to treat his skin condition. Grace recollects that, as instructed by Percy’s paediatrician, the potent steroid cream was to be used even as a nappy cream.
Percy later underwent the stages of topical steroid withdrawal. Grace remembers that bathing Percy was like “running a concentration camp”. “It was just a bath, but it was so painful,” she says.
She recalls having to drag him into the bathroom and strip him. When his raw skin came in contact with the water, the excruciating pain would make Percy wail and scream.
For members of the support group who go through the painful topical steroid withdrawal process with their children, their anguish is amplified when their neighbours report the parents to the police, thinking that the children were abused while unaware that the parents were simply trying to bathe their children.
Grace says that life was hopeless and excruciating during that period. She also recalls having to deal with comments such as, “You brought this upon yourself. You didn’t want to see a doctor, and now you are doing this to your son too.”
Grace recounts feeling so awful that she thought about “jumping [off a building] so many times”.
“But I was kept alive by God and my family,” she says.
Light at the End of the Tunnel
“Just grit your teeth for that 3-4 years, and then, you will emerge from that very dark and painful tunnel.” – Grace Ng, founder of the Eczema & Allergies – Go Natural Health Champions Support Group
It seemed like a nightmare that would never end, until April 2011, when a friend recommended Grace a strain of probiotics, LactoGG. Grace wonders if it was because her system had been off steroids for three years, and Percy’s, for 6.5 months. But soon after taking the probiotics, she says both mother and child’s withdrawal symptoms came to an end.
Grace describes her healing from her topical steroid addiction as “both a complete, and ecstatically euphoric one”.
She remembers reaching that milestone in June 2013, when Singapore was hit by one of its worst hazes. On the day that the PSI hit past 400, Grace was perspiring profusely and directing traffic under the blazing sun, when she realised she was not itching at all. At that moment, she thought, “I have healed. I have really healed.”
“To be able to stand in the sun for a long time, scream and direct traffic, and not itch, it’s a miracle,” she says.
This came after over three decades of topical steroid use, 12 futile surgeries due to eczema and allergies, and enduring the harrowing process of topical steroid withdrawal.
Percy healed as well, after enduring 6.5 months of topical steroid withdrawal.
“So just bear with it no matter how painful it is, and go through that withdrawal, just like a drug addict who goes through rehab,” she says.
“Just grit your teeth for those three to four years, and then, you will emerge from that very dark and painful tunnel.”
Four years later, she has completely recovered from her eczema and steroid addiction, although she still struggles with the side effects of long-term steroid use – cataracts and adrenal insufficiency, which often leaves her fatigued. Nevertheless, she persists in her endeavours to raise awareness about topical steroid addiction.
Epoch Times (ET): Tell us how you founded the Eczema & Allergies – Go Natural Health Champions Support Group.
Grace Ng: Prior to setting up the group, I shared my experience and knowledge about the probiotic strain, Lactobacillus rhamosus GG (LactoGG), topical steroid addiction, and how you can stop steroid creams and go into a difficult time of withdrawal, but then be completely healed after your body is done with the withdrawal.
We were sharing about that in March 2013, and one of the members in the session asked me: “If we are going to stop steroids, is it going to be difficult and painful? And is it going to be a difficult journey as you mentioned? Could you start a support group then?” I initially said no because I didn’t feel like I was up to it.
But after receiving repeated requests, I agreed on the condition that there would be volunteers to help me manage the group and its Facebook community. The member who first made the request to start the support group that day is the main volunteer helping to run the Eczema & Allergies – Go Natural Health Champions Support Group today.
Currently, I am blessed with eight passionate volunteers, all either TSW warriors themselves or caregivers of loved ones going through, or have gone through TSW. Together with a good friend of mine who is a traditional Chinese medicine (TCM) physician, we have run quite a number of talks, seminars and workshops for eczema support group members.
We share with one another how we can heal from eczema and allergies naturally. We organise talks and invite naturopaths and TCM physicians to speak. We teach sufferers how to make their own enzyme drinks at home, among other things, and how to read food and product labels.
We also aim to provide support to ‘topical steroid withdrawal’ warriors in their various stages, to raise awareness on the side-effects of topical steroids (i.e. steroid creams) on eczema sufferers, and to educate the public about the effects of steroid creams, and how one can grow dependent and then addicted to them, leading to ‘topical steroid addiction’ and what ‘topical steroid withdrawal’ entails.
The group is largely Singapore-based, but being online, it attracts people from all over the world.
ET: What alternative treatments are there for eczema?
Grace: For people who are atopic, we know that it is an immune problem.
Much of the immune problem stems from the gut. For many people, it is a leaky gut. For some people like me, it is worsened by adrenal insufficiency.
If you know that leaky gut is the problem – and of course there are ways to test it with a naturopathic doctor – then diet is a major issue, and also, healing channel. You can avoid the following eight major allergens to reduce the inflammation that all eczema sufferers battle with, because these foods feed inflammation:
– Tree nuts (such as almonds, cashews, walnuts)
– Fish (such as bass, cod, flounder)
– Shellfish (such as crab, lobster, shrimp)
I also advise leaving out nightshades, which are vegetables, like tomatoes, capsicum, pepper, or vegetables that have a “cap” on it.
You can also opt for naturopathic treatment or TCM. But some TCM practitioners still give you steroids. Hence, you have to really know what goes into their herbal remedies.
But there is one thing that won’t work on truly healing eczema – any form of steroids.
ET: What are the possible side-effects of steroids?
Grace: If you Google it, you will see a whole list of side-effects. Perhaps I will mention a few.
Firstly, steroids thin the skin. And after the skin is thin, the skin is susceptible to a lot more external damage. The other thing is that when the skin has synthetic steroids applied to it, it suppresses our immune system and our body will start to become dependent on the steroid.
It may also affect the eyes and the internal organs, like myself. These are well-documented by our group and other groups worldwide.
Your adrenal glands and liver will suffer. In our support group, we have members who have experienced renal failure (kidney failure).
The worst case scenarios would be heart failure. We have one group member who has experienced heart failure.
For me, I found that my adrenal glands were badly compromised when I collapsed after a period of overwork. Thus, I have a very chronic case of adrenal fatigue that I am currently battling.
And I had retinal detachment and cataracts in both eyes. The cataracts don’t affect my vision as badly, but the retinal detachment surgery caused permanent damage to my eyes. Even with two re-constructive surgeries, my vision wasn’t restored.
The effects of steroids are very far-reaching.
You may not see it externally, but the effects of steroids are internal, involving the organs and the eyes.
ET: What would you say to those who are suffering from this condition?
If you or your loved ones are experiencing eczema, and you find that the rashes are getting redder, the itch is getting out of control and the rash is spreading, and you have tried all sorts of things such as dieting, changing the carpet, but the eczema is just getting worse … then perhaps the treatment you are getting (that is, the steroid) may be the issue.
You may want to do a quick online search on ‘topical steroid addiction’. There is so much information now as compared to the time I decided to stop all steroids in 2008.
There are many blogs by patients who have gone through the withdrawal process and have healed, and patients who are still going through the withdrawal process. There are many authoritative websites, such as www.itsan.org, that give a fair amount of information on what “topical steroid addiction” or “red skin syndrome” are.
If you think you are addicted to topical steroids, then my recommendation would be to discuss your next step with your family.
If you have decided to stop steroids, then it needs to be done with your family. You really need the social and emotional support of your family.
If you are in Singapore, join a local support group.
Even though we find that everyone eventually emerges from it healed, it is so much more difficult when the eczema warrior goes through it alone.
Topical steroid withdrawal is truly, in all honesty, a drug withdrawal for a drug addict. You will heal from the addiction, but you must persevere.
|To learn more about the effects of steroid use –
Secrets of Korean Medicine Part 5: Get Off Steroids