How I Was Introduced to Clinical Trials
Have you ever felt like you have exhausted everything possible to help your eczema, only to leave YOU feeling exhausted in the search?
I was exhausted
That was me. It was 2012. I was in so much despair. A friend invited another friend over for a spiritual gathering. The woman who came brought me an NEA magazine (National Eczema Association). At the time, I was so frustrated and angry, not able to find any lasting solutions, I wanted to throw it out. Having never read this publication, my thought was, “What could anybody possibly tell me that I don't already know about this condition, as I have suffered and lived with it for so long?” Little did I know, those pages in my hands would not only hold the key to a turning point, but they would also bring me HOPE that I tried to keep alive every day - the hope that I could one day inspire others by paying it forward.
A woman's story changed everything
As I looked past the pages of products and advertisements, I came upon an experience about a woman sharing her painful yet promising journey. She had just returned from a hospital in Colorado and had gotten massive relief through 10 days of wet wraps and topical steroids. I saw a ray of sunshine and immediately contacted her. While that was only a temporary remedy for her, she shared she was about to enter a clinical trial study for eczema. I didn’t know that this was even available for me. I became curious, and she shared her doctor's information.
How do clinical trials work?
For those unfamiliar with how a clinical trial works, it goes something like this:
When a pharmaceutical company has created a drug as a treatment for a particular condition (in our case, atopic dermatitis), they need to test it on patients for various aspects to ensure its safety, efficacy, reactions, physiological effects, etc. This all needs to be substantiated or proven before the FDA (Federal Drug Administration) approves the drug. Once approved, which can take years in some cases, it goes into the market as an available drug to be prescribed.
What are the different types of clinical trials?
There are several different types of clinical trials for example, double-blind, meaning both the doctor and the patient don't know if you are getting the actual drug or the placebo. A placebo is a fake drug that the patient thinks is the real thing. For instance, people in one group get the tested drug, while some others receive the placebo. It’s a gamble, the one I was willing to take. Ironically, I got the placebo for six months and had to wait to get into what is called the crossover, when you begin to receive the real drug. That was the grilling part for me, though again, I held hope that the drug would work.
What else should you know?
While there are, of course, always risks in such trials, including not knowing what the ingredients are (because it's not FDA-approved or available information), the company is still in a particular phase to perfect the meds and dosages. Basically, we are guinea pigs. The upside is that the doctor has done the research to inform you of all the details and answers to all your questions. What is important in this process is the trust and relationship between you and the doctor performing the trial. My doctor has been offering clinical trials for decades, so he's only going to consider what he believes is safe for his patients.
The clinical trial I'm in
Since my journey with Dupixent, I have been in 2 other trials that had, unfortunately, both been unsuccessful. While it has been a lot of ups and downs through these past few years, presently, I am in a new trial called Lebrikizumab, which I am thrilled to say, has once again given me my life back with almost no side effects!
How can you get involved?
There are many clinical trials available and a lot of research in the pipeline in the future of what’s to come to the aid of eczema. If your doctor doesn't offer clinical trials, you can do your own investigation to find one of your own in your surrounding area. You can go to www.clinicaltrials.gov and under "Condition," type "Atopic dermatitis." There are several filters that you can fine-tune your search by area, who is recruiting or yet to recruit, etc.
Well, the pandemic has been an unfortunate time for many. At the same time, we are fortunate that atopic dermatitis is at the forefront of raising awareness and scientific research to support us with the condition beyond steroids. Living life with hope and curiosity about what is possible can be our best friend, especially during challenging times.
I had to let go
The most important lesson learned during all my years with eczema was letting go of everything I think I know! That was what ultimately introduced me to the option of clinical trials. Now I am doing what I had always intended, paying it forward ❤
Have any questions? If you'd like to hear more details about clinical trials, please don't hesitate to reach out to me.
It's Eczema Awareness Month! Have you shared your eczema story on AtopicDermatitis.net?