Psoriasis

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

Empowering Psoriasis Patient

The landscape of the psoriasis and psa community is changing rapidly.  In the last five years I’ve seen more progress than can be imagined.  Everything seems to be in place for the development of safer more effective treatments.  I wouldn’t be surprise in the next twenty years scientists discover a cure.  I call it “snowball research,” mainly because as we move forward the amount of research being done for our disease is growing exponentially. I believe social media is the hill that is the downhill catalyst helping us generate inertia and velocity towards our goal.  Many patients are flocking to facebook, twitter, instagram, pinterest, wordpress blogs, to share their stories and pictures.  Many have become passionate and obsessed posting in support groups and participating in studies.

Patients are only part of the equation.  Pharmaceutical companies are competing for market share with newer safer medications.  The National Psoriasis Foundation is the leading advocate for our community.  I’m proud to say I am a member and have been for years.  I do what I can to drive traffic to their website through our support group Overcoming Psoriasis.  That’s where I met Maria Bascetta who is a personal trainer and health coach.  She launched her own personal website at www.mariabascetta.com.  I would like to share her story and pictures that she shared with me.  In her own words:

“SO. I started noticing signs of autoimmune disease when I was young.  Like 12-13 yrs old. Itchy scalp, eczema, hives all the time. Was diagnosed with mild psoriasis or eczema back then. Given tar shampoo, all the creams. Didn’t really work but skin didn’t get too bad.
Went away to college in DC at 18. Skin started to get worse around then. I wasn’t healthy. Smoke, drank, didn’t eat well. Then when I turned 20ish I started to get severe joint pain and all sorts of skin worsening symptoms. Got diagnosed with Lymes Disease after a year or trying to figure out what was happening. Met a nutritionist – she started helping me look at my diet. During the Lymes treatment which was heavy heavy antibiotics for over a year my skin got terrible and my joints got terrible. Was put on methotrexate which caused me to bruise all over and feel terrible. Skin cleared up. Took myself off the methotrexate and my joints and skin rebounded into worse than ever.
Found a Dr in Maryland (Dr Lawrence Green) – derm, who I really liked. Did Talconex, topicals. A course of light therapy with him. Took a while but my skin cleared. All the while working in the health industry and training people. My joints stabilized but were swollen a lot. I was in pain but was afraid to try anything after the methotrexate stint.
Went vegan, went paleo, cut alcohol, had quit smoking, started managing stress. Kept reading about what to do naturally. Did another course of light therapy when it came back. Worked but not as well. Continued topicals. It came back a year later. I dreaded summer. I covered up. My hands were swollen.
Bought my own light box … did that for a bout a year before I moved to Nashville in 2014 Oct. It worked. But it was getting hard to manage. Was blasting myself with light for over 30 min a day trying to get each body part. (smaller box). Ended up googling “new treatments” and reading about cosentyx and finding the facebook page.
Asked questions on the facebook page – met everyone. Got excited. Seemed safer than other meds and more successful. I always feared meds bc I am so young. (Im 32 now).  Found a dr – Dr. Jennifer Lee in TN. Talked to her. Called my old doc, Lawrence Green who is using Cosentyx for patients. Made the jump in May of 2015. Dr. Lee has been great. I cleared by mid June (started may 7th ish). My joints don’t hurt. My skin looks beautiful. It has been life changing. Been on one pen for the last three months.
I am thankful that I never gave up. I kept waiting and hoping and staying positive. I competed in grip this year b/c my hands don’t hurt. I have some residual damage but it’s minimal. Being sick has given me so much empathy and so many gifts when it comes to working with people. I know what it’s like to want to hide / to want to stop / to be hurting but to be a very physical being. Movement has been and will continue to be my life in many forms. I am very grateful.”
I’m inspired by Maria and her motivation to succeed.  If you want the support and the information to help you succeed I encourage you to join our group Overcoming Psoriasis on facebook.  While there you will gain helpful tips to control your psoriasis and psa.  You will be able to read about others and their challenges.  The group is closed so others who are not members will not see what is being posted or written.  The group is protected by five experience admins.  We have successfully directed people to doctors that specialize in our disease.  We discuss OTC treatments and Home remedies.  We are a one stop support group.  Nothing is left on the table.  Everyone is treated with dignity and we have strict rules and guidelines to keep the rift raft from trying to sell you overpriced “miracle cures.” Thank you Maria for being brave to share your story.

Outstanding Leadership Award

Outstanding Volunteer Leadership Award Finalists

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Todd Bello center

Volunteers are those who find the courage to transform the challenges and frustrations of psoriasis and psoriatic arthritis into positive action. Volunteers are the faces and voices of the National Psoriasis Foundation’s work.

At our National Volunteer Conference, the Foundation recognizes several outstanding volunteers. These individuals bring creativity and commitment to fulfilling our mission. The result: Deep community impact that cannot be measured by numbers or dollars alone.

Please join us in celebrating these volunteer leaders. Their extraordinary efforts symbolize the thousands of other volunteers who embody the mission of the National Psoriasis Foundation, and who give us all hope that one day we will find a cure for psoriasis and psoriatic arthritis.

NPF Volunteer Finalist Todd Bello
Todd Bello

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Long Island, New York

Todd works tirelessly to create awareness for psoriatic disease and help those affected. He runs a psoriasis support page on Facebook called “Overcoming Psoriasis.” He dedicates his time to reaching out to others and provides information, support and experience in dealing with all the challenges of psoriasis and psoriatic arthritis. His smile can lighten anyone’s day and his positive attitude is truly inspirational.

Todd also assists others with psoriasis and psoriatic arthritis through his participation in the Psoriasis One to One mentor program. He has become a fixture of the National Psoriasis Foundation New York Community Division and all its events, including fundraisers and educational seminars.

Todd has taken initiative to help in any way he can let others know about NPF resources. Todd’s passion and enthusiasm is contagious and he lifts the spirits of everyone he comes into contact with. Todd is a born leader who volunteers out of a deep passion for helping others and alleviating suffering.