Living in the shadows of life. Avoiding social situations and activities. Staying out of relationships. Never wearing dark clothes. Deep depression and low self esteem. Changing careers or even choosing unemployment all because we fear what others will think. It’s all very hard to understand if your not actually living with the disease.

Maybe you’re newly diagnosed or you’ve had this disease for years, some of those situations might be your reality. I’ve experienced all those feelings and more. Years ago I literally had to “hang up my hat”.

Former Fireman/EMT Lieutenant Hook & Ladder. Fireman of the year 1995

The good news now is that this situation can be avoided. Due to the fact that we have so many treatments available. I can only speak from my experience. Still to this day, there isn’t a cure for psoriasis. But there are new and FDA approved prescription medications that are safe and effective. I know from what I read in the many support groups I’ve started that people are very concerned with side effects. I’m well aware of these concerns. I educate myself about each medication before I consider using it in order to control my disease. Most of you are aware that these drugs have to go through vigorous clinical trials and be evaluated before they are approved for use to the general public. I’m hoping my testimony helps you decide to seek help from your dermatologist or rheumatologist.

I was diagnosed with psoriasis when I was 28, over 30 years ago. My psoriasis was relentless, it took over my entire body. I felt helpless and it got to the point I felt worthless. I was at the lowest point of my life. Nobody could say or do anything to make me feel better. My psoriasis consumed me. I had a family to support and things got so bad it turned out they had to support me. Not something I would wish on anybody.

Then by some miracle I got a phone call about a clinical trial. I asked what it was all about and they explained. I didn’t know what to think or to say. I really didn’t have a choice, my disease took over my life. I was miserable. So much pain and embarrassment. I elected to volunteer for one of the first trials using an immune suppressant drug.

Just because I had my back against the wall didn’t mean I didn’t do my homework. I’ve read that this form of treatment was very promising. I sign the paperwork and started the medication. For the first time in years after many failed treatments my psoriasis was under control. I was extremely excited. I thought for sure this was the answer. But before I could celebrate a year later they withdrew the medication due to serious consequences for four patients in the trial. I rebounded from head to toe. I was hospitalized.

But I wanted that control back. I knew it was achievable and so did the scientists. They never gave up, they knew they were onto something. And they were right. Thanks to science we now have several immune suppressant biological medications that work extremely well. The safety profiles are stellar and their efficacy are exceptional. What’s great about these medications is that they target a specific pathway of the disease leaving the immune system intact. The medication blocks that pathway preventing the progression of psoriasis and psoriatic arthritis.

Unfortunately for me these drugs came a little late to the game as far as my careers were concerned, but I’m not complaining cause I’m practically 100% better. If I was newly diagnosed I wouldn’t hesitate to seek professional help. But don’t take my word for it, join one of the many support groups I’ve started and listen to others that have chosen this path.

Severe Plaque psoriasis of my back on the left from several years ago. The image on the right is a current photo of me using prescription medications.

I just wanted to add that I also apply topicals both prescribed and over the counter. I am also somewhat active with fitness and I educated myself about nutrition. Essentially I believe you can achieve these results too. Psoriasis is a serious autoimmune disease and needs to be addressed. If left untreated it can cause irreversible damage. We are at greater risk for several life threatening diseases. I’m encouraging you to come out of the shadows and live your life to the fullest.

#psoriasis #psoriaticdisease #overcomingpsoriasis #psoriaticarthritis #overcomingpsoriasis #dermatologist #skin

Incredible Transformation 

Today I write about a member of our support group Overcoming Psoriasis.  He joined our group right after he lost his young and beautiful mom, Deborah.  He was at the veterinarian attending to his beloved dying dog when he got the call about his mom dying from cancer unexpectedly.  He lost both his mom and dog within two days of each other.  Tyson W. Poole told me, “This caused my psoriasis to flare.” It was then he decided to do some research on the internet.  His search about psoriasis resulted with him finding our support group.  

I also experienced this when I lost my father a few years ago.  I will never get over the loss of my dad and I miss him dearly.  Unfortunately I also lost a dog about a year ago.  I can relate to the pain and the stress that Tyson experienced. Psoriasis can be triggered by situations like these. I’ve read many stories about people in similar situations that experienced a bad flare during stressful and emotional situations.  

Tyson is 35 years of age and lives in North Carolina.  His psoriasis started at the age of 22.  His disease primarily affects his hands, feet, scalp, ears, and right arm.  I asked him if any of his family members had psoriasis?  He replied, “Nobody in my immediate family and none of my aunts or uncles has psoriasis.”  He does however have a cousin who was covered with psoriasis.  According to reseach, a person has to be predisposed in order to manifest the disease.  It is believed that psoriasis will only present itself if you have an inherited gene.  It’s possible to go through life with these genes never being triggered. Scientists are still trying to figure out how to turn this expression of the gene or genes off.  If you want to learn more about the exact science, I suggest you explore the resources at the National Psoriasis Foundation.  

100% cleared using Stelara by Janssen. Never give up!

Tyson was a forklift operator at a lumber yard and a huge fan of NASCAR.  Like most people who develop severe psoriasis, it affects every aspect of your life including your career.  Tyson tried many treatments in order to gain control of his disease.  He used countless topicals ointments and creams.  He also failed a well known biological medication that is a TNF inhibitor.  He was then prescribed an oral medication that wasn’t successful.  Tyson’s psoriasis was very stubborn.  Using the advice from our members he never gave up.  His doctor was wasn’t up to speed on the latest treatments and was hours from his home.

Tyson needed a more convenient doctor who was knowledgeable about our disease. Fortunately he found a doctor that cared and found a treatment that worked.  His doctor prescribed him Stelara.  However, it wasn’t until the third shot of Stelara that completely cleared his disease.  He felt it working after the second shot and noticed slight changes with his plaques.  These injections are taken every 90 days so it’s important not to lose hope with a particular treatment. 

Tyson’s experience with our disease had a negative impact on his life.  People treated him differently.  Tyson said people wouldn’t want to associate themselves with him. Tyson often felt humiliated in public referred to our disease as a living nightmare.  He eventually lost his self-confidence and isolated himself from society.  Even family members disassociated themselves from him.  Because our disease is visible and unsightly, many people have the misconception that it’s contagious. Psoriasis is not contagious.  Most people don’t realize that psoriasis is a serious autoimmune disease and that the commorbitities can have grave consequences.  It got to a point where Tyson couldn’t walk or handle things due to the pain.  His life became unbearable.  

Because of Stelara, Tyson regained his quality of life.  The medication works by blocking the pathways of IL-12 and IL-23. Tyson is a big fan of Nascar’s Kyle Busch.   Tyson now feels comfortable in his own skin and feels that he can conquer the world.  With his new lease on life he hopes to one day meet and shake hands with Kyle Busch.  Tyson lives 20 minutes from the maintenance shop of Kyle’s car and visits there often.  He is considered a regular and views the cars being worked on as a spectacular behind the viewing glass.   I hope and pray Tyson gets to meet Kyle in person so his dream will come true.  Tyson is an inspiration to us all in the psoriasis community.  

These medications are not cures and are temporary at best.  There is no “one size fits all,” so more research is needed in order to develop a cure.  When I was first diagnosed over 25 years ago none of these medications existed.  Scientists need research funds in order to unlock the code of this insidious disease.  That’s why I volunteer for the National Psoriasis Foundation.  As an ambassador, it is my job to raise awareness and to help educate others about this misunderstood disease. Many people don’t know that psoriasis affects the joints, tendons, ligaments, and organs. Inflammation throughout the body causes so many other ailments.  I believe we are so close to finding a cure.  Please consider joining me and the NPF and let’s eradicate this disease forever.  Let’s spare future generations from the embarrassing effects of psoriatic disease.  Sponsor team Overcoming Psoriasis for our walks and cycling events through the NPF.  The NPF is an accredited organization voted by Consumer Reports.  

NPF #FlauntYourFlares Instagram Campaign: NPF will be launching an Instagram hashtag campaign to coincide with the first day of summer, Tuesday June 20th. The campaign is called #FlauntYourFlares and is designed to encourage people with psoriasis to not let a flare stop them from enjoying a healthy, active lifestyle. We want people to know that though they are treating their psoriasis with medication flares are a reality of psoriasis and can happen at any time. We are asking people to post a photo of themselves during a flare on Instagram and to include an inspirational quote and the hashtag #FlauntYourFlares. Throughout the summer, NPF will highlight one winner a week via NPF social media channels and a second winner will be selected to receive a summer healthy lifestyle kit. 

The National Psoriasis Foundation will also be celebrating their volunteers at the National Volunteer Conference in Chicago on August 3rd to 5th.  This will also fill up so order your tickets here.  We use the hash tag #NPFNVC2017