While at a conference in Chicago, I was asked to speak about my advocacy.  This event is one of my favorites.  The people who attended were advocates from around the country and from various disease states.  Those who are selected have campaigns in place and use social media in order to help others.  These advocates are volunteering their time.  They are what we call in our community, Psuperheros!  

Patient advocates are compassionate and very knowledgeable about the challenges facing their community.  Let’s face it, Healthcare is a complicated subject.  Thanks to this venue we are able to make sense of it all.  These PA’s are seemingly creative.  They go above and beyond all expectations.  The way I see it is when something steals your dreams and ambitions, I’m fighting it back in any means possible.  Social media has helped me raise awareness for our community.  
Thanks to Janssen Pharmaceutical and their vision to partner with patients, HealthEVoices was born three years ago.  This year 105 advocates participated and we all met at the Swiss Hotel.  All accommodations and travel was paid and sponsored by Janssen.  The Tonic team works diligently all year to set up this wonderful event.  Nothing is left out. 

This year I was asked to participate in a video interview with a friend of mine from the HIV community, Josh Robbins.  @I’mstillJosh has a huge following and also has a talk show.  I felt very comfortable speaking on camera with him. He is very professional.  Being in front of the camera has been a hang up for me.  I’m challenging myself to be more articulate and share vital content.  I’m a work in progress. 

Healthline partnered with HealthEVoices and is responsible for this video.  I hope you enjoy my story.  Thank you for your feedback. 
Here is the clip. https://m.facebook.com/story.php?story_fbid=1915928381978274&id=100006833921341

My name is Todd Bello and I’m 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. I never even heard 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 55 this year and I’m still determined to help 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 others. I’m glad that my Cosentyx injections are keeping both my psoriasis and psoriatic arthritis in check. I’ve been on Cosentyx for over 2 years now and it’s extremely safe and effective.

I’m excited about 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-23. 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.

We will be having a cycling event on Saturday May 13th. I would love to beat last year’s numbers. My Goal this year is to raise 10k. I need sponsor’s and cyclist. The National Psoriasis Foundation is rated among the best charities as per consumer reports. Please email me if interested tvsoccerdad@yahoo.com thank you for your consideration.

#psoriasis #psoriaticarthritis #psa #Janssen #NPF #Novartis #Lilly #Amgen #Abbvie #Celgene #Cyclists #Bikeshops #plaque