Story
Hi everybody :)
My name is Eliza, I was diagnosed with acute guttate-psoriasis at 19 years old and have spent the last year and a half getting it into remission. Its a very big part of my life personally and challenged me in many ways. I’m currently holding the goal to stay in remission for a minimum of 5 years. Although living with psoriasis has been difficult at times, it has taught me how resilient I can be and pushed me into fitness. I took up skipping around the time of my diagnosis and its a bit of a niche-sport that I fell in love with. Skipping, in many respects, has become a huge coping mechanism through thick and thin. I empathise with how isolating it can be for those effected and I want to share my journey to demonstrate that your diagnosis doesn’t have to rule your life.
What is Psoriasis?
Psoriasis happens when certain types of immune system cells will accidentally recognise a type of skin cell in the same way they normally would do for an infection. This means you body starts to treat your skin like a cold and attack it with the same ‘vigour.’
Whats actually happening is a mis-recognition event between very specialist cells called helper T cells and receptors on your skin. This is because for some unknown reason those critically important T cells underwent improper selection in the thymus and were allowed to terminally differentiate, despite harbouring the ability to bind body cells. Normally, your thymus will stop any immune cell that can bind a body cell from being ‘activated.’ Very basically, immune cell binds skin cell and kickstarts the same kind of immune system response you would undergo if you had the flu. Where your immune system is attacking your skin, your skin starts to break apart. The skin is the largest organ in the body and a primary line of defence against pathogens in the environment. Imagine having an open wound that could never closes because whats causing it is happening from the inside. In an effort to stop things from getting real bad, your skin ‘hyperproliferates’ to desperately try and maintain the barrier, and that causes the formation of “plaques.” Plaques are very itchy and painful and in some cases can continually break open and bleed. Psoriasis can be accompanied by a range of symptoms in flare that leave you feeling a little less then 100%. For less fortunate individuals, psoriasis can spread to other epithelial membranes like that of the intestines (causing IBD) or freak out patients immune systems causing erythrodermia, which although very very rare is also very very deadly. Psoriasis is completely incurable although in some people (hopefully me) it can go into remission for long periods of time.
Living with psoriasis:
Psoriasis is a lifelong condition and can dampen your quality of life pretty considerably: Treatment programs, symptom management and self esteem can all take a toll on both your physical and mental health. For me personally, post-COVID, I underwent a considerable amount of un-regulated photo-radiation therapy and corticosteroid abuse, leaving me with significantly thinner skin that can tear under pressure as well as an elevated risk of skin cancer. I went through multiple flares and particularly suffered after a hospitalisation for a bilateral peritonsular abscess, which kicked up my immune system and forced me into an even harsher treatment programme. Post treatment, I exhibited symptoms of cortisone withdrawal syndrome and developed both perioral-dermatitis and general dermatitis. I’ve had lesions flagged for skin cancer, had periods where my hair was thinning during treatment and have been left with lost of scarring. In flare, treatment would take me upwards of 2 hours a day and the progression psoriasis is unpredictable over time. Because my type is so rare, even getting diagnosed is a challenge and it took me around 2 months to get a diagnosis. Nowadays, in remission, I deal with hyperactive and very dry skin that flares up to small triggers like contact with my own sweat and water. Psoriasis changes the way you live your life from small things like being unable to tie back my hair because of pressure on my scalp, to more significant effects like being unable to take a variety of painkillers and following specialised post-care plans. Current treatments on the NHS have very long lag times or are completely unavailable in parts of the UK, for example, one of the closest NHS wards to me has a wait time of over a year. At some points in flare, I was spending upwards of £100 a month just on necessary medicine because it was only available on private prescription. Its a testing journey, but I’ve accomplished more than I ever thought I would with it, and want to show others that they can live a normal, mostly-unaffected life too.
Why research in this area is important to everyone:
Research in psoriasis will contribute to more than just helping me and others effected by the condition. As an undergraduate biochemist who wants to work in this field I’m very passionate about alternative treatments and improving medicine for everyone. My condition is very very rare and only affects about 1% of psoriasis suffers, keeping in mind that psoriasis effects less then 2% of the global population. For those interested in cancer therapies, many potential treatments being researched are involved in NfκB, a variety of interleukins and cytokines and well as T-regulatory cell therapies. There are some very cool interleukin blockers and antibody therapies available to patients currently, but many of these treatments come with a nasty cocktail of long term side effects. Immunomodulation therapies and improving our understanding of inflammation goes far beyond autoimmunity and can help with research into slowing tumour progression, diabetes or any other chromic progressive disorders. For example in Alzheimers progression, its known that a greater stimulation of inflammatory pathways is linked with an increase in specific protein aggregates that directly cause the disease. In fact, 60% of world-wide recorded deaths are associated with chronic inflammatory diseases so research in this area is critical to modern medicine. By donating to this cause or even just supporting me in it, you can help with life saving research into disease progression and inflammation.
Why I want to do this:
Many sufferers of psoriasis struggle with health and fitness. When you’re peak flare, its pretty much impossible to work up a sweat without being in pain and you don’t really want to hit the gym. Ive experienced both UVB and PUVA burns which have caused blistering on over 40% of my body, so even just getting dressed in the morning is tough when its like this. Treatments are exhausting and time consuming so finding balance is pretty hard. Psoriasis suffers therefore confer a greater risk of comorbidities including depression, anxiety and obesity. Fitness is directly linked with a reduction in obesity and improvements to mental health. Inflammation being one of the key players in a bad psoriasis trip, consistent exercise and movement has been shown by countless studies to decrease inflammation and promote homeostasis. Fitness is one of the biggest tools for healing in your psoriasis tool-box but its very hard to do when your dealing with so much on top. For me, fitness has become a huge stress relief and paramount to my journey with my skin and immunity. Its improved my confidence, helped me trust the process of healing and shown me how lucky and grateful I am to be able to push myself mentally and physically. Not only am I doing this to raise money for life-saving research into autoimmunity, but hopefully to also encourage any psoriasis suffers who may see this to not let their condition get in the way of their personal goals. From my own experience, I can guarantee that nothing is more satisfying then beating the thing thats predisposed to make you fail.