Living with Severe Psoriasis: A Personal Story

My name is Brenda Spinozzi & this is my personal story of living with severe psoriasis. I reside in Sarnia Ontario with my husband John & have two grown Children Jennifer & Mark.

psoriasis-personal-story

I am an active person who can now say yes to a spontaneous Weekend away, I can expose bear arms and a flash of leg, wear a bathing suit and be a full participant in life. These are all things unimaginable until approximately 13 years ago.

My life since the age of 5 years had been consumed with severe chronic psoriasis. I was five years old & living in Ireland when my family physician diagnosed a scaly red spot on my forehead as psoriasis, shortly afterward that spot spread to become an itchy, red scaly rash on my skin and head which in my case covered 90% of my body for most of my life, I am now 54.

I suffered from severe chronic plaque psoriasis and was hospitalized for treatment three times in Ireland & after moving to Canada hospitalized five times as a youth & three times in my adult life. Each hospitalization lasted between 4-6 Weeks, and treatment consisted of applying smelly tars & creams all over my body including my head then being wrapped in saran & covered with bandages, this treatment was done twice daily until my skin showed enough improvement for me to once again return home. Life for me in between hospitalization was characterized by mostly ineffective conventional treatments these include topical therapies such as ointments and creams containing corticosteroids or coal tar, phototherapy (ultraviolet radiation), and systemic therapies such as methotrexate, etretinate and cyclosporine.  These treatments can have limitations that prohibit long term use, some of these treatments alleviated symptoms to a small degree.  Chemical drugs such as methotrexate can cause liver damage so while I was on this drug I had to endure several painful & potentially dangerous liver biopsies to ensure no damage was occurring to my liver.  While on cyclosporine I had several renal scans again to ensure that no damage was being done to my kidneys. I felt that using these medications where risks worth taking as I had more luck controlling my psoriasis with these systemic therapies than all other conventional treatments. I know these drugs can also take a toll on the body, but again a risk worth taking when your alternative is living your life every day with severe psoriasis. I remember Joking with family & friends about these risks & saying, (well I would rather live to be 80 happy instead of 90 miserable from the heartbreak of psoriasis).

Before systemic therapies were available, my day to day life for years was all about handling my psoriasis.  I planned my life around treating my skin & alleviating discomfort.  I couldn’t wait till the end of the day to have a bath and soak my skin & then apply prescribed creams or ointments to my body all the while knowing the next evening my routine would start all over again. Having to apply ointments & lotions to my body & P&S liquid to my scalp, then cover it with saran wrap & cap it off with a hat or scarf just to soften or loosen the thick buildup of scale on my head. Then the following morning having to use a fine tooth comb to dig into my scalp & remove the softened scale.  Then wash my sore & bleeding scalp with tar shampoo. All this being done & repeated every couple of days to relieve the itch & tightness of my scalp. You could say my head felt like it was in a vice grip. Pillows, sheets nightclothes covered in smelly tars & lotions from the caps falling off during the night, restless sleep from tossing & turning trying to get comfortable. Despair is what I felt even though I tried to always remain upbeat in front of others. God forbid someone find out my secret.  I went to great lengths to make sure no one could tell I had such a severe condition, always dressing so no one would be able to see I had this affliction, long sleeves, turtle necks & even sweaters in the middle of the summer were a part of the day to day wardrobe. Wearing lighter colours so no one could see the constant dandruff like scales falling of my head, arms & legs. I remember having to go to church on Sundays having to wear a scarf on my head as lotions had been applied to my scalp to soothe it. Sometimes it was hard to hide my psoriasis and the stares or dirty looks from the public made me feel like a leper or a contagion.

Having severe psoriasis from a young age & treatments not being what they are today, I always felt I would never find an effective treatment to help me live a normal life.

Looking back as a child I remember other children making fun of me, one Halloween a bunch of my class mates wrote “SCURVY” on the outside wall of my house. When I saw that written in soap on the wall of my home I was devastated & embarrassed. Once when I finally got up the nerve to go swimming with a friend at a public pool, I was asked to leave the pool as people were concerned that my psoriasis was contagious.  As a teenager I was let go from a job at a restaurant, a job I loved & had worked hard at for 3 years because the management could no longer deal with customer reactions to my skin.  I could never even think of being involved in sports & had to wear black tights under my shorts & long sleeve shirts to high school gym class. I would only wear a bathing suit in my secluded back yard & going on vacations with family or friends was out of the question. I never thought about having a boyfriend because my skin was so bad, I knew no one would ever be interested & I really didn’t want to put myself in a position to be hurt. On a positive note, you sure do duck a lot of frogs when having psoriasis as only a person with real depth would be committed to a relationship with someone with this condition & therefore when I did date & get married I felt like I got the cream of the crop.  When I was thinking about a career I choose nursing, probably because of all those hospital admissions over the years & seeing how caring & compassionate nurses were to their patients. My life dream was to become either an Operating room or emergency trauma nurse. I was advised by a college representative after applying that due to the severity of my skin condition it would be better suited for me to pick an alternative career.  These are just a few humiliating moments, knowing that I was suffering not for something that I did but for something that I had no control over.

Despite the debilitating pain and disappointment I tried to remain upbeat.  I learned to conceal my psoriasis with the proper attire and a positive outgoing attitude, no one except my family & close friends new how severe my condition really was. I guess you could say I was “living undercover”.  The general public would have been shocked if they saw what was hidden under those clothes.

I have worked full time for 29 years at Blue water Health Hospital as a pharmacy technician.  Physical discomfort or pain was a daily concern, soreness, itching, and tightness of the skin.  I’d work through the pain & if it became unbearable I would go to the washroom at my break or lunch, remove my clothes, apply cream to soothe my skin then stay unclothed until the cream soaked in then return to work with some relief.

I personally have not lost much time away from work, but I believe this is because I have had to deal with psoriasis since I was a child so I have found ways to cope. It wasn’t easy but I had to stay strong both physically & mentally. I was determined not to let this disease beat me!!

Over the years the emotional effect takes a toll, I would get worn out & sometimes feel depressed but tried to keep things as normal as I could especially for my husband & children. I feel very lucky to have met my husband John who looked past my psoriasis and saw me. My children are also loving, supportive and understanding.  Having caring people in your life who are educated about psoriasis is so important.

Psoriasis is a painful & disfiguring skin disease; it is embarrassing, and often hidden because of the shame associated with it. Many people suffer in silence day after day, month after month, for years.

I have also suffered with psoriatic arthritis over the years & at one time around the age of 20 could hardly walk until I was diagnosed with psoriatic arthritis & given anti-inflammatory medication.  I even had to wear slippers to work until the anti-inflammatory medication started to work.

I feel very fortunate to have found an amazing dermatologist, and not all dermatologists are created equally!!  My Dermatologist has always been committed to help me access the newest, most effective, research based therapies to help control my once uncontrollable psoriasis.  Finding a dermatologist to partner with in the fight to bring this disease under control is a must!! I’ve found that if you work with a dermatologist that is educated & current on treatments for this condition, psoriasis can become treatable, not easy to treat, but treatable.

Thirteen years ago my dermatologist introduced me to a newer class of treatments known as biologic therapies, these work on the body’s immune system from the inside out and have been approved to treat moderate to severe forms of psoriasis & psoriatic arthritis.

I was very excited about the possibility of finally finding a treatment that would give me a whole new outlook on my life.  As excited as I was, my dermatologist explained to me that I would have to cease using all other medications that somewhat controlled my severe psoriasis for a 3 month period.  This was done in order to cleanse my body before starting the biologic therapy study.

Those 3 months were excruciating, my whole body ached in red tight itchy skin. I looked like a third degree burn victim.  After years of dealing with severe psoriasis and not knowing if this new biologic therapy would work I could feel myself losing hope.  I remember breaking down one night in my bedroom, sobbing and asking GOD if it would be possible to trade living with psoriasis for cancer, you may think me crazy, but in my mind at least with cancer you can’t see it and there is either a cure or an end!! I know that I am not alone, in Canada there are about 1 million people that suffer from varying degrees of psoriasis & many are dealing with the same issues that I have dealt with.

I made it through those 3 agonizing months and within a couple of Weeks of starting the biologic therapy I noticed my symptoms diminishing.  Twelve Weeks after my initial injection my severe psoriasis were 80% cleared.  

My dermatologist and I work together to ensure that my psoriasis continues to no longer be a part of my daily life.  I can finally work without pain, wear what I want, take a trip south, power walk & bike ride to keep in shape, wear a bathing suit to the beach, spend more time with family & friends.  I have even been sky diving. The new treatment of biologic therapy has unveiled that cover I have been wearing for years.  I have done things I would never have been able to do before.  I would like you to know that you do have a choice to seek treatment & you deserve to live your life to the fullest without the weight of psoriasis on your shoulders.

Severe Psoriasis ranks number two in terms of its impact on emotions & quality of life out of the ten worst diseases that you can be afflicted with, this includes cancer, heart disease & diabetes with congestive heart failure ranking number one.

Psoriasis was extremely debilitating for me and I know first-hand how much a disease like this can affect a person both physically and emotionally.  It has taken some time, but I can now say that my psoriasis is under control.  I have learned to manage it.

Currently in Canada there is very little recognition about psoriasis and its burden on the people who have it. My life-long struggle with psoriasis coupled with the lack of awareness and knowledge surrounding it has prompted me to want to voice my opinion and story, in the hope that I can help others in some way. Working with the Canadian Psoriasis Network also gives me an opportunity to help others.  

 

Brenda Spinozzi has suffered from severe psoriasis since the age of 5 & is now 54. She lives in Sarnia Ontario with her husband John & has 2 children Jenn (25) & Mark (23). She has been a pharmacy technician for the past 29 years and is a board member for the Canadian Psoriasis Network (CPN) & has been involved with the network since 2015.
Her mission is to help others suffering from psoriasis &/or psoriatic arthritis. She would like to make a difference in the lives of people who live day to day with this devastating Disease. HELP, HOPE, HEAL.
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