How Psoriasis Changed my Life…

My Arm

My name is Todd Bello and I from New York.  I was diagnosed with psoriasis at the age of 28. Unfortunately psoriasis is a chronic autoimmune disease and there is no cure.  One misconception about psoriasis is that it is “communicable”.  Because psoriasis is visible and looks similar to poison ivy, people may feel concerned they can “catch” the disease.  My message and the message from the entire psoriasis community is that psoriasis is not contagious.  

My psoriasis started with a small red spot on my scalp that wouldn’t go away.  I went to a dermatologist who confirmed it was psoriasis.  Never even hear of psoriasis before that day.  I was very concerned. Since then I did a lot of research and I found out there is no cure and it’s a chronic autoimmune disease.  I’ve tried so many treatments. 

I’ve been in four double-blind studies. I signed up for these studies because nothing at the time was working.  My psoriasis eventually covered me from head to toe.  I later on developed psoriatic arthritis as determined from a rheumatologist.

I’ve tried everything imaginable including photo therapy, the Dead Sea, Skin Cap, Acupuncture, Herbal remedies, Dr. Pagano, Tanning, Raptiva, Embrel, Engineered Tuberculosis Injections, Gluten-Free, Diets, Topicals, Exercise, Hot Yoga, Healing Masses, Steam Baths, Sulfur Baths, Epsom Salt, Spring Water, Florida Natural Spring Soaks, Steam Rooms, Saunas, Tanning Booth, Chiropractic Adjustments, High Colonics, Dovonex, Talconex, Sulfasalazine, Coal Tar, Florida Sun, Aleve, Cortisone Injections etc..I turned 50 this year and I’m still determined to find a cure.
I have two wonderful children that love and support me. I have a great network of friends through the National Psoriasis Foundation.  Because this is a chronic illness I fight it each and everyday.  I decided volunteer my time and to help others by raising awareness. This disease knock the crap out of me and I want to prevent that from happening to other people. I’mean glad that my Stelara injections are keeping both my psoriasis and psoriatic arthritis under control.  I’ve been on Stelara for about 4 years now and it’s extremely safe and effective.

I’m excited with all the medical break throughs for our disease state.  I’m also very thankful to the National Psoriasis Foundation whose mission is to raise funds for resarch.  Many pharmaceuticals companies are investing time and money for better solutions. When I was first diagnosed the only treatments available were coal tar, topical cortisone, methotrexate, light box, puva, and cyclosporine. I voluntarily signed up to participate in four clinical trials because nothing was working. The new biological medications target specific pathways of the immune system leaving the rest of immune system intact. There is a new drug in the pipeline that blocks IL-17. I heard the results are outstanding.  These treatments are available to patients with moderate to severe psoriasis.  

I enjoy helping others so I started a support group called Overcoming Psoriasis.  The group offers advice and emotional support and is very informative.  If you have psoriasis or psoriatic arthritis please consider joining.  Thank you for reading.

13 thoughts on “How Psoriasis Changed my Life…

  1. Hey Todd,

    Great article. A couple of things. I have been in two studies. The first was Abbot’s failed replacement for Humira (it worked on me, but not good on some others) and currently I’m finishing up an efficacy study with Lilly for a new drug (Ixekizumab) just approved which is SPECTACULAR (laser beam targeting, compared to Humira)

    Also I did about 5 years of Humira back before ObamaCare.

    I have a couple of points which I am writing as “White Papers”, and wanted to give you a heads up if you want to be on my review list and perhaps give comments.

    There are two topics:

    1. Big Pharma – is it more profitable to manage disease than to cure it? I think this is an issue that needs national discussion. My perspective is as a free market conservative, not a Bernie Sanders “make the rich pay” posture.

    2. A new insurance product for people with serious diseases like PS which bypasses health care insurance entirely.

    A sub-set of this is the problem of getting new insurance, where they don’t want to pay for biologics for the first two years until you’ve used a bunch of sh*t creams and blasting your skin on the photo-copier at the office twice a day. Trust me non of this stuff works for aggressive PS.

    We have to find a way that if you have been properly diagnosed with PS you don’t have to go through that protocol to get treatment.

    That’s all. You are courageous to take on this Biblical-type disease, which I WOULD wish on my worst enemies, but that’s just me. 🙂

    regards,

    Brad Chisholm
    Los Angeles
    bradchisholm@me.com

  2. Pingback: Sabrina Skiles Shares Her Psoriasis: Inside Story - Homegrown Houston

    1. We had a great time that day provided to us by #Janssen, who sponsored the event. Sabrina you are so right about @KatieLowes she is so down to earth. Remember when she asked me. “So this is acting, what do you think”? I responded, “you get paid for this”?
      This reason being is because she is so talented and a natural, she makes it look so easy. Wouldn’t you agree?

  3. Hi Todd—
    First I want to say thank you for participating in clinical trials. My husband has this condition. He’s fortunate to where his weekly steroid shot manages to stop his spots from spreading. But honestly, that boy could be covered with it from head to toe and he would still look like an adonis to me.Your disease may be literally visible, but I promise that to the people who love you—it’s not!
    Hope you find a treatment that can help make you more comfortable. I’ll definitely be joining your group to stay updated and see if there’s anything that might help my husband in the future. Thanks for your advocacy!

  4. Tara Stok

    There is no cure for psoriasis or any other chronic illnesses because Big Pharma wants to stay rich by treating and managing the diseases instead of letting a cure be available. They only care about the money not about the pain and suffering of people. So if you have a chronic illness, get prepared to suffer and live in pain for the rest of your life because Big Pharma is greedy and wants to get rich off your pain.

  5. Saria

    You do so much, it has brought those who thought they were alone with this disease to see there are others suffering right along with them.

  6. Lisa

    This disease knocked me down for a bit.but after a few years I woke back up and decided not to hide anymore do what I want wear what I want and love live life again with or with out psoriasis.currently on otezla 1 year this July…gtrat article Todd. And thank you for the overcoming pso page,it has been an amazing tool!!

  7. Laurie white

    Awesome job on the article Todd. You have explained what a lot of us have gone through. I have never done clinical trials always afraid it would be worse.

    1. I like clinical trials because they first determine if your healthy enough to participate. They examine your blood for everything. And it costs you nothing. I cleared from the first drug they put me on called Raptiva. Unfortunately after they took me off I rebounded from head to toe. Raptiva was one of the first biologics to be administered to psoriasis patients. Later removed because a few people experienced fatal results.
      The newer treatments are very safe and effective. Hood luck on your journey.

  8. Anonymous

    I was diagnosed at the ripe age of 34. My grandfather had it and they hosipitalized him several times. He went through massive tar baths and uvb light treatments. Exactly what they do to us today. I self injected Emblel, went and got infussions of Remicade…for years. It was killing me. I stopped everything. I am now clear with Epsom salts in my bath. The drs cant explain it because thet didnt “prescribe” it so they cant monitor it.

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