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“I cannot remember a time of life where my skin did not itch or hurt”

By Mya Salawu

I cannot remember a time of life where my skin did not itch. Or dry out. Or hurt. That’s the worst one: when your skin hurts. As a kid with atopic dermatitis, you would think having weird, scaly skin on your arms and face would be hard. Having skin on your face that was always dry and painful was hard. On top of that was feeling left out.

I remember in grade 5 when my hands, arms and face were peak flare-zone. Winter with eczema is no joke. I would sleep with wraps and layers-on-layers of Vaseline. It was not enough. Much of the time I could barely hold a pencil because it hurt too much to bend my fingers. As I type this I am having some trouble. Imagine playing in the snow. Oh boy. All I wanted was to build forts and make snowballs. Imagine the pain of near frostbite on your cheeks. Now make it 10x worst. That is what I feel every winter almost as soon as I step outside. I love wearing a facemask – exactly what I needed as a kid.

As I type this, I’m looking at my big tub of lotion that is cannot live without. I got it a month ago and it is already half empty. I get as excited for getting new lotion as I do when a new season of my favourite show comes out. #obsessed. If you have a friend with eczema, it is guaranteed that they would love the gift of a lotion refill. Winter is coming, time to stock up.

Variety of therapies

You might be wondering, there should be a cure by now, right? Not just yet. There are, however, a variety of therapies, I should know, I have tried loads. When I was younger, I focused more on a pharmacological approach: from prescription creams, ointments, even for a while I would use a special shampoo because my scalp would be so dry it would bleed. Some worked, some didn’t. The hardest part is when something amazing stops working after having built a tolerance to it. I have a collection of half empty tubes of various ointments that I had to stop using since they either stopped being effective or started to make my skin worse. Worse! It can be frustrating at times.

Avoiding trigger foods

Now, I am trying out a medicine cabinet-free approach. Recently, I have changed my diet. So far that has helped. I avoid trigger foods like dairy, anything heavily processed and started eating more foods like fruits and nuts that help fight inflammation. I am in no way a healthcare professional, but this has helped me a bit. Moisturizing any time after contact with water as well. I have my tub of lotion anytime I shower, swim or go to a waterpark as well. Nothing I have done has gotten rid of my eczema 100%, but it has become more manageable. Now, I can go to bed without getting distracted by my arms being really itchy. Even now I occasionally wake up due to itchiness, but I am learning to manage that. Right now I don’t really need to wrap my arms while I sleep, but winter is coming, so I am need prepare for that. Time to get my Rocky playlist going, it’s training season!

Though I have had eczema for much of my life, there is still quite a bit for me to learn. Yourself as well. Atopic Dermatitis is a fairly common condition. Sure, there’s no cure, but that will not stop me from doing… anything really! Like many chronic conditions, I make adjustments as I go through life one jar of lotion at a time.

Thank you!

Clinical Trial Hero would like to thank Mya for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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There is hope with MS.

By Robin Vinge

I believe I have had MS since I was 21 years old although I was not diagnosed until I was 33 years old. Part of the reason why I believe I was okay for the longest time was because I avoided wheat (because I thought it triggered acne). When I was 33, I signed on for a marathon and I carbo loaded where I had previously avoided wheat pasta and consuming a lot of bread products. That is when I developed strong symptoms of numbness and ataxia that could not be overlooked. I also developed loud ringing in my ears.

At that point I went to the urgent neurology clinic and my family paid for an MRI which showed demyelination. Since that time and a second MRI that confirmed my diagnosis, my life has changed a lot. I have been living with MS since I was 21 (I believe) because I had symptoms of weakness in my legs (I was a high- performance athlete in my youth) intermittently in my twenties as well as some sensory symptoms that showed up from time to time. I have radically changed my diet in order to manage my MS and it has paid off.

I was super exhausted.

I have studied every expert with MS and feel very competent in my management of it. I did not always feel this way. It has taken me many years to feel confident in my management of it.

In the fifteen years following my diagnosis, I have had some challenging episodes of relapse and have been completely incapacitated at times. One flare I had left me unable to talk and communicate verbally. Another episode I had double vision for 2 weeks. Another bad flare lasted 6 weeks. In that episode, I actually flew home to Kelowna and moved in with my parents until I could function again. In that flare, I lost the use of my hands and felt like I had the sensation of splinters throughout my body. I was super exhausted and in bed for the majority of that flare.

The anxiety and depression of having MS is challenging.

In 2017, I had started running and I had a flare which started with an episode of sciatica that ended up with me being hospitalized because I had extreme pain when I was trying to lie down. I had severe symptoms at that time including clonus. I was put on steroids in the hospital and got out in 2 weeks time. If I stay on my diet which is extremely strict 100%, I feel that I can live in balance with MS. Management of MS is a full- time job though and it is not for everyone.

The anxiety and depression also that comes with MS is challenging. I have done so much work on my self. I meditate every day. I manage anxiety with Emotional Freedom Technique and supplements like L-theanine. I live each day in the present moment and have done training in Mind/Body/Medicine to best equip myself with life long management of MS.

I am grateful for the positive benefits.

Since MS showed up in my life, it has affected every part of my life and I am grateful for the positive benefits that have incurred because of it. I have become more self aware and believe in myself more. I have so much compassion towards myself and my life post MS.

I come from a big family and my siblings have been so helpful to me if I have needed any support. I can keep going because of them and their love for me. I am truly grateful for them. I have a significant other but I have no children.

Empower people with MS.

If you have recently been diagnosed with MS – there is hope. When I was diagnosed with MS, I was shown a graph with a path leading downhill and that was so discouraging to me. There are people that are living in balance with MS all over the world and I am one of those people.

There are programs with other doctors leading that path like George Jelinek (OvercomingMultipleSclerosis.org) in the U.K.

To empower people with MS is so important so they do not feel like a helpless victim of their fate. There is research underlying the recommendations for management of it.

Robin Vinge is a naturopathic doctor and gifted presenter, Dr. Robin Vinge combines the values of naturopathic medicine with self-empowerment. Her strategy is to provide simple solutions that anyone can apply immediately and see beneficial results. “The quicker people see results, the more likely they are to invest in doing the right things for their health.” www.robinvinge.com

Thank you!

Clinical Trial Hero would like to thank Robin for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

Sign up for updates on more stories and upcoming clinical trials near you.