Dear Fellow Psoriasis Sufferers,
I’m happy to introduce to you some products that are all natural and can now be bought on Amazon. Imagine you can gain control of your symptoms of psoriasis by simply applying these lotions and gels. I’ve been using them in conjunction with my biological medications and I’m doing great. You can too. Www.abundantnaturalhealth.com
Psoriasis affects 2 to 3 percent of the world’s population. Seven and a half million Americans suffer with our disease. Psoriasis is often associated with depression and heart disease. The comorbidities of Psoriasis are disabling and if left untreated could be life threatening. The inflammation reeks havoc throughout the entire body, not just the surface of the skin. The visual symptoms on the skin are only a indication of the disease deep within.
The disease is classified in three objective ways. Mild, moderate, or severe. There are also a few types of the disease; Plaque, Guttate, Erythmodermic, Pustular, Inverse, and Psoriatic Arthritis. The disease can affect the skin, soft tissue, ligaments, bones, joints, eyes, nervous system, circulatory systems, organs, and motor function.
Psoriasis is often misunderstood, misdiagnosed, painful, and embarrassing. There is no cure and treatments are very costly. The disease is relentless and can severely affect a person’s quality of life. Control is possible but it’s often hit or miss. Control requires a knowledgeable doctor and somewhat knowledgeable patient. Within the last decade many new treatments have been approved for use by the FDA. Some are more effectives than others.
My experience with biologics has been up and down. With each new medication I’ve experienced different results. It’s difficult to determine the outcome before the drug is actually prescribed. You have to roll with the punches. Each medication has a different medical device for delivery. The mechanisms I find are easy to use. All are subcutaneous, but vary in the amount of live cells injected.
Anyway, the purpose of this blog is to update you with my experience. As you may know I have a severe case of Psoriasis. I have the disease for 28 years or half my life. I’ll try not to bore you with details. Hopefully my experience provides you with hope and the possibility of remission. Although remission is the wrong word, I like to use it because it’s understood by most.
So let’s talk about the last three biologics I’ve been on briefly. Novartis’s Cosentyx was an amazing medication where I gained control for just about 5 years. After experiencing breakthrough and joint pain my doctor and I decided to try the new drug Tremfya. I had decent control for just about a year. Tremfya is a Jannsen product that binds with specific proteins called Interleukins. More specifically IL-23. My belief for my short term control was because I was on another product of Janssen’s called Stelara. I got 5 years of remission from this similar medication tthat binds with IL-12 & IL-23. This is why I believe Tremfya was short lived. Our bodies eventually build antibodies that recognizes the medication and renders it useless. No fault of the drug.
That brings me to the medication I’m on now. Taltz is a Lilly product and I was skeptical at first only to be pleasantly surprised with how fast it worked. Almost right away if you could imagine. I know that’s hard to believe but it’s true for both my PsO, PsA, and inverse. Taltz is a TNF inhibitor.
It’s extremely exciting for me to report this to my followers. I honestly haven’t felt this good in a long while. Taltz is a game changer for me. If you don’t have this disease it’s hard to understand. But for those of you who do, reading success stories about treatment options is like riding Rock-n-Roll rollercoaster at Disney. Chronic disease most often chranges your life. The trick is to discover how to change it for the better.
Please click the follow button below where you need a magnify glass to see it. Thank you in advance.
Here is a short video I did showing how I inject myself using Cosentyx. Cosentyx is a live biologic that is prescribed for both psoriasis and psoriatic arthritis. The medication has been out for a short period of time but has made a significant impact in the psoriasis community.
Although the video isn’t technique perfect I encourage viewers to read the instructions provided by Novartis.
Also, each medication prescribe for our disease has different techniques of delivery. There are also many medical devices that work differently. It’s important that you receive specific training for the device you are using. Most pharmaceutical companies provide some sort of training. Ask your doctor to better guide you.
Thank you for viewing. Please subscribe to my youtube channel.
Perhaps you’re not eating enough Natto!
K2 is an interesting superfood I just discovered from one of our members. Different from K1 nutrition mostly found in veggies K2 is found in fermented foods like cheese and Natto. What’s Natto? Glad you asked. Natto is a Japanese dish that contains high quality K2.
I will be writing a blog about someone who claims he cleared from this superfood.
With each year I attend the National Psoriasis Foundation’s Capitol Hill Day I become more and more familiar with the routine. I wanted to write this blog in order for you to understand exactly what goes on in DC both before and during our advocacy. Now mind you, there are many voids to fill in our community. I’m sure some of you have felt some of the inefficiencies of our Healthcare System. As we all know there’s a lot of issues and many dollars wasted because of the bureaucratic red tape. It’s up to our elected officials to do their job and to eliminate wasteful spending and to improve Healthcare as we know it. Let me assure you this is a bipartisan issue. My focus is to restore the authority to our prescribing doctors and to put the #patientfirst.
Nevertheless we are focused on the laws that govern our community. So first things first let me walk you through the day before Capitol Hill day.
Many of us who were invited by the National Psoriasis Foundation were either ambassadors or advocates. This year many people wanted to attend. That is why I never take it for granted and I’m honored to be part of this opportunity. So on the 19th of March I flew in to DC from New York in order to participate. Click the hashtag #NPFADVOCACY for more stories about this day.
Our Mission: To Drive efforts to cure psoriatic disease and improve the lives of those affected. (NPF)
Before our trip to DC we had a hour long conference call that briefed us about what was to take place on that day. I’m glad the call was recorded so this way I was able to listen once again in order to know what is expected of me. The call started promptly with our federal Government Relations VP Patrick Stone and our Government Relations and Health Policy Manager Jessica Nagro. The call was on point and very resourceful. Also on the call was Amy Prentice who is also part of the NPF Advocacy team.
So the night before Capital Hill day we had a prep dinner hosted by the National Psoriasis Foundation. We receive training packets that was loaded with information in order to prepare us for the next day. Patrick Stone once again started us off. Leah Howard COO of the NPF also spoke and brief us about our organizations mission. Jessica Nagro spoke about the information in the packets. The seating was by states. This way we could practice our lingo in order to prepare. Patrick Stone had four people role play the office visit. They acted out three scenarios each one better then the other. The first act they mentioned the wrong disease state…we all had a laugh.
So that night I was extremely restless, I didn’t get much sleep. I later contributed it to the supposed decaf coffee I consumed at dinner. Anyway, needless to say I was early for breakfast. This isn’t my first rodeo so I went down in my NPF cycle shirt and jeans. Everyone else was in their suits. ( I’m thinking newbies) Said my hellos and went back to my room to change. Dressed up and got ready to give them the “what for”.
I was very happy with our team. We had a student doctor and a lawyer. We also had Heather Miller who lead the way. We were well prepared. I brought a picture when I was covered in psoriasis. When that photo was taken I felt I had one foot in the grave. I was ashamed, alone, and extremely depressed.
I’m so proud that I was able to share my story with these elected officials. We spoke mostly to health policy staff members who seemed to like what we were saying. I wanted to bring a message that was relatable. I told them I was like everybody else who wanted to live the American Dream. I was a father of two impressionable children. A lieutenant fireman/EMT, a soccer coach, a business owner and a postal worker. All that changed when my disease became to aggressive to bare. Then I explained our “asks”, I thought they were reasonable. To me this fun. I love listening to my colleagues and hearing the feedback from these officials.
I would have to say all of the staff members agreed with our agenda. It was a bipartisan approach that put the #patientfirst. It just makes sense. I have to say our last meeting was my favorite for two reasons.
1. It was my district
2. We met with the member.
So exciting that we actually met with Representative Rooney from SW Florida. We saw him in action running around with papers in his office. We first met with his chief of staff and then got to shale hands with Rep Rooney in his office. It was there where I briefly told him the importance of our visit. I explained our asks and he was very in tune with our agenda. He struck me as a no nonsense sort of guy. Like a drill sergeant. He articulated very well. His last comments were that he looked forward to seeing me in SW Florida. Now you know I will be paying him a visit at his local office in our District… Knock, Knock, Knock.
Get involved, your voice matters. If you need to find me I’m usually helping others with our disease in our support group Overcoming Psoriasis at http://www.Facebook.com/groups/psowhat. If you want resources about psoriasis then I highly suggest visiting the NPF website http://www.psoriasis.org. Thank you for reading.. please follow and subscribe.
Once again the National Psoriasis Foundation and it’s team of advocacy advocates will be heading to Washington DC to address the issues facing the psoriasis community. We will be talking to congressional leaders about our proposed Appropriations bill and Step Therapy bill. https://www.congress.gov/bill/115th-congress/house-bill/2077
These bills if passed into law will not only help the psoriasis community, but will also help other auto-immune disease communities. The one bill that addresses “step therapy” just makes common sense. The bill will simply fill prescriptions as written by your doctor. You will no longer need to “fail first” a less safer, less effective, less expensive medication before the original one is dispensed. Here is a copy of the letter that I sent to my congressman;
“As a constituent affected by psoriatic disease, I am writing to urge your support for a FY 2019 appropriations funding request to expand research in psoriasis and psoriatic arthritis.
The requested FY 2019 funding will build upon the foundation of the Centers for Disease Control and Prevention’s (CDC) public health agenda on psoriatic disease. Specifically, the $1 million request would support research on the connection between psoriasis and psoriatic arthritis and other chronic conditions. As psoriatic disease is one of the most prevalent autoimmune conditions in the country, it is critical that we invest in public health research to better understand the disease, its connection to other chronic conditions, and interventions to improve health, well-being, and quality of life.
Congresswoman Wasserman Shultz (D-FL) and Congressman Costello (R-PA) circulated a Dear Colleague letter earlier this week and I respectfully urge you to add your name to the letter. This modest funding will go a long way to advance care for the more than 20,000 psoriatic disease patients in your district and the 8 million affected nationally.”
Please contact Kaitlyn Lane in Rep. Wasserman Schultz’s office at email@example.com or Elle Ciapciak in Rep. Costello’s office at firstname.lastname@example.org if you have any questions or need any additional information.
I hope you will consider supporting the Dear Colleague and the funding request. I look forward to hearing from you about this request.
Your voice is important to our community. Your voice will fund critical research needed for better treatments and/or a cure. Your involvement will improve the SOP’s by which prescriptions are filled. Let’s stop the common practice of undermining our highly educated doctors and fill the prescriptions as written. Makes sense!
Contact the NPF and get involved http://www.psoriasis.org
Written by Todd Bello in collaboration with the National Psoriasis Foundation.
Ambassador to the National Psoriasis Foundation
Founder of Overcoming Psoriasis http://www.Facebook.com/psowhat
#NationalPsoriasisFoundation #psoriasis #psoriaticarthritis #NPF #chronicillness #overcomingpsoriasis #Senate
World Psoriasis Day
This Sunday is World Psoriasis Day. How cool is it that the entire world will be celebrating our cause Oct. 29th?
Most of you know me from my support group Overcoming Psoriasis. My name is Todd Bello and raising awareness about psoriasis has become my passion.
I was first diagnosed with psoriasis at the age of 28 and it all started with a small scalp lesion. Red, raised, and itchy this spot wasn’t going away no matter what I tried. That’s when I got the diagnosis. My dermatologist told me; “It’s Psoriasis”.
I never even heard of this disease. I couldn’t even spell the word. All I knew is, I had to beat it. I researched it high and low, spent countless hours chasing my tail. At the time it wasn’t classified as autoimmune disease. There wasn’t to much information or treatments available. You see when I was first diagnosed smart phones didn’t exist and Facebook wasn’t even a thought.
Thankfully things are different today. Because of technology I’m able to order my medications with one touch of a button. I can stay up to date on the latest medical breakthroughs. And I can share my story and photos on Social Media.
There are so many misconceptions about our disease. Because it’s a visible disease people think it’s contagious and often feel stigmatized. Social media is helping us get the word out that it’s NOT contagious and it’s “More than skin deep”.
Which leads me to #ShowYourPsoriasis.
#ShowYourPsoriasis is a social initiative to encourage people like me and you to embrace their disease and share with the world via social media as well as using Imagine app. #ShowYourPsoriasis would like to encourage people to feel comfortable when taking pictures of their skin.
The Imagine team is running this campaign as part of #WorldPsoriasisDay. Imagine app helps track your psoriasis and take more control of your autoimmune disease. Take a selfie for science and #ShowYourPsoriasis today.
How to take part? Just share a photo via social media and include the hashtag #ShowYourPsoriasis!
Have a sense of community on World Psoriasis Day and Show Your Psoriasis! Have a wonderful day.
#psoriasis #psa #psoriaticarthritis #overcomingpsoriasis #worldpsoriasisday #NationalPsoriasisFoundation
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.
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
Go “BIG” or go home. Well it doesn’t get bigger than the grand ballroom at the Plaza hotel in NYC. Once again the National Psoriasis Foundation leveled up their (our) fight against psoriasis and psoriatic arthritis. Last night over 400 guests pack into the Plaza. These guests were from all over the country. We gathered to honor Dr. Gerald Krueger and Mr. Dale White.
I wanted to share with you my experience, but first let me introduce our honorees. Dr. Krueger is a Professor of Dermatology, Benning Presidential Endowed Chair University of Utah School of Medicine – Dermatology Former Chair and Chair Emeritus, NPF Medical Advisory Board Member, NPF Research Committee Member, NPF Scientific Advisory Committee. Honored as the most influential physician. After hearing him speak last night I can see why.
And Mr. Dale White, Excutive Vice President, Sales and Account Management, Multiplan, Inc. Former Chair, NPF Board of Directors. Honored as the Most Influential Volunteer.
My role amongst several other outstanding volunteers was to greet and seat the guests as they arrived. As people enter the reception and registration area they were greeted with drinks and appetizers. The rooms were magnificently decorated with gorgeous flowers and wall coverings. All attending were dressed to the nines. It looked and felt like a red carpet celebration. The only thing missing was Access Hollywood asking people who designed their wardrobes.
The NPF is celebrating its 50th year driving, discovering, and creating a community that is patient driven. We have a common goal and that is to end this insidious disease through research. Our 50th Celebration Gala Chairs for the evening were Carol Ostrow and Michael Graff. Two of the warmest people you will ever want to meet. They are always so generous with their time and money. They are caring and loving. We need more people like Carol and Mike in the world.
The night started off with a speech from the NPF Board of Directors Chair, Colby Evans, M.D. He touched upon the last 50 years and how we look to a future free of psoriatic disease. He thanked our long list of Honorary Executive Committee members including; Randy Beranek, Dr. Colby Evans, Dan Farrington, Jodi and William Felton, Dr. Krueger, Mike Laub, Dr. Liu, Carol Ostrow, Pete Reading, Richard Seiden, Terri Theisen, Karen and Dale White.
And our Honorary Committee members Dr. Bagel, Dr. Koo, Dr. Lebwohl, Dr. Menter, Dr. Feldman, Dr. Gelfand, Dr. Lockshin, Eyal Ofir, Dr. Van Voorhees, and Dr. Williams.
And none of this would if been possible with out our Premier sponsors; Anonymous, Mike and Carol Laub, The Ostrow Family. PlatI number Sponsor, Janssen. Gold sponsors; Abbvie, Lilly, Leo, Novartis, Pete and Lorelei Redding. Sliver sponsors; Celgene, Pfizer, Sun Pharma. Bronze Sponsor; Amgen, Dermira, Aqua, Strata, Multiplan, Valeant, Randy Beranek, Colby and Sarah Evans, Dan Farrington, The Grau Family, Dr. Krueger, Dr. Liu, Richard and Ellen Seiden, Theisen Consulting, Christina Tom and Family. And our Corporate Table sponsor; UVBlock.
We had some great entertainment from the cast of Kevin Can’t Wait. Christopher Brian Roach, and Lenny Venito. They served as our Emcees for the evening. I was fortunate to catch this on video.
Then we proceeded with the live auction where our audience members were most generous. The Auctioneer was Mark Schenfeld. He did a marvelous job raising funds for our cause.
Kathleen Gallant, MPA, spoke about her struggle with pso/psa since the age of 12. She formed a support group and was on the board for the NPF. She is now on the board of the International Federation of Psoriasis. Her story is unique yet similar and she speaks from the heart. She goes on to say; “I will never say Psoriasis is a blessing”. However she embraces the friends and relationships our community has afforded. I have to agree with Kathleen in that regard.
The night ended with videos and speeches form our Honorees. Coffee and dessert was served and we wrapped the night up with over 2.2 million dollars raised. This night was a huge success and I was happy to be invited to serve as a volunteer. Things ran extremely smooth thanks to our CDM Kimberly Schleyer.
On a personal note I wanted to thank all those who volunteered their time and participate in this 50th year Gala Celebration. We are making history and our efforts will curb the suffering for future generations.
I would also like to thank Healthline.com for voting this best blog of 2017.
This Event was sold out and it took place at the Plaza Hotel in NYC on Thursday June 8th. Hash tag #NPF50th
The National Psoriasis Foundation will also be celebrating their volunteers at the National Volunteer Conference in Chicago on August 3rd to 5th. I am proud to say I am a finalist for OUTSTANDING VOLUNTEER. This will also fill up so order your tickets here. We use the hash tag #NPFNVC2017
NPF #FlauntYourFlares Instagram Campaign: NPF will be launching an Instagram hashtag campaign to coincide with the first day of summer, Tuesday June 20th. The campaigned 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.
Men’s Health Week Begins June 12th: In honor Men’s Health Month (June), NPF will share stories of men living with psoriatic disease to inspire men to talk more openly about the disease and to contact the Patient Navigation Center for help finding specialists, getting support and taking charge of their health. Stories will be shared via the NPF Blog and Advance and social channels. Additionally we will be hosting a specialFacebook Live event on Thursday, June 15th at 12pm Eastern / 9am Pacific. During this event, NPF will talk with NPF volunteer Chris Pettit about fatherhood and psoriatic disease. In honor of Men’s Health Month, Chris will share his story about living with psoriasis – from adolescence to parenthood. RSVP for this event at https://business.facebook.com/events/1397886496926495/