Tony Crimmins, psoriasis patient and CEO of Abundant Natural Health, hosted this interview. We discussed my support group Overcoming Psoriasis. I would like to thank all the members who made our group a huge success. Much work went into this group over the years. I believe our success has to do with the willingness of the members to share their experiences. We can all learn something from each other. It’s a blessing for me to be part of this. Thank you all once again. Because of you I’m Overcoming Psoriasis!
August is Psoriasis Awareness Month and it’s also our 10 year anniversary here at Overcoming Psoriasis. I would like to thank all of you who have made this group a huge success. To celebrate please join me on my FB lives for 10 days starting on Monday. Some lucky members who participate will receive free Ocean Soothe products from Abundant Natural Health. Share an experience with me live and you are guaranteed a product.
Why is Psoriasis Awareness Month so important to me? There are so many misconceptions about psoriasis. Over the years with huge efforts from the National Psoriasis Foundation, I feel more people are aware of our disease. More people know our disease isn’t contagious. More people know our disease is a serious autoimmune condition that goes beyond the skin. More people know Psoriasis is a genetic disease and once triggered it affects every aspect of your life. More people know there is no cure, only control. More people know it affects 2 to 3 percent of the population, roughly 125 million people. At least 7.5 million Americans suffer with psoriasis. More people know it’s the most prevalent autoimmune disease. More people know it affects the joints and organs too. More people know Psoriasis presents other circumstances that can be life threatening known as comorbidities. More people know it can affect the eyes as well. More people know it can be disabling. More people know depression is extremely common in our community. More people are Overcoming Psoriasis with our support group. Thank you to all our members, God Bless!
(((Hugs))) all around.
Psoriasis can be a frustrating disease. Psoriasis has been around forever, it’s a disease that dates back to biblical days. This autoimmune disease affects 2-3 percent of the world population. The National Psoriasis Foundation estimates around 125 million people suffer globally. In the United States 7.5 million Americans are afflicted with this insidious disease. There are so many misconceptions about our disease. Let me just say this before we go on; “PSORIASIS IS NOT CONTAGIOUS” and “PSORIASIS IS MORE THAN SKIN DEEP”.
I was diagnosed with psoriasis at the age of 28. I wanted to start a family with my wife at the time. I was very concerned that my children would develop the disease. Due to my research I discovered that my kids had a small percentage of developing the disease. If one parent is genetically predisposed to psoriasis the odds of the child having the disease is only 3%. If both parents have the genes the percentage increases to over 50%. There is also some science that indicates psoriasis can skip generations.
If you have psoriasis I don’t have to tell you how painful, itchy, flakey, stubborn, relentless, depressing, tiring, aggravating, embarrassing, frustrating, resistant to treatment, completely misunderstood, visible, invisible, life altering this disease it can be. I’m writing this blog to share with you my success.
I don’t want to bore you with past treatments. I will only share with you what I’m currently using. Trust me I’ve been on many treatments and I’ve tried just about everything.
First and foremost, it behooves you to see a board certified dermatologist and rheumatologist. Nothing what I say is to replace your doctors recommendations. These are purely my experiences. Everyone’s experiences will be different. Just wanted to mention that as a disclaimer.
So let’s start with my number one reason for my success. At this time I’m using a biological medication prescribed by my doctor called Taltz. It’s made by Lilly pharmaceutical. According to scientific data it’s safe and very effective. Many patients that were in the clinical trials for the medication achieved 100% PASI score.
My routine also includes some form of exercise in order to help the bodies organ functions. When I trained my travel soccer team as a coach I used interval training. Interval exercises are very effective getting the body in shape in a short period of time. Without a lengthy explanation, it’s high intensity exercises followed by low intensity exercises. Rinse and repeat. Regular exercise can help the circulatory systems of the body. Including the lymphatic system, blood circulatory system, nervous system, and the endocrine system. I like to use low impact exercises so I don’t injure myself. Exercises that are easy on the joints, tendons, and ligaments. Walking, swimming, bike riding, resistance bands, light weights, hiking, calisthenics, stretching, and even beginners yoga.
Climate therapy is often undervalued. I try and get 30 minutes of sunshine per day. I find this very important. Most of us who suffer with autoimmune disease are vitamin D deficient. Sunlight provides that vitamin and helps eliminate the symptoms of psoriasis. Sun and sea can help change my moods as well. Often while I’m on the beach my moods are lifted and I feel so much better. Of course, there have been times when I was covered in psoriasis and I felt self conscious. Vitamin sea is essential so regardless of how I felt, I needed to be out in the sun. Light box is another alternative. Tanning can also be substituted but the risk of skin cancer should be considered. Talk with your dermatologist for more suggestions.
So many of us struggle with diet. I assure you I struggle too. But I developed life hacks that has helped me along the way. Years ago I was a lawn care specialist and I applied some of those techniques to weed out my psoriasis. Just like with a lawn we fertilize the grass in order to crowd out the weeds. I use this technique with nutrition. I use the 80/20 system in order to maintain my weight and control my cravings. Arbonne has the best nutritional supplements. They have been in business for over 40 years. I believe their products help to reduce the inflammation throughout my body. Therefore reducing the symptoms of my disease. My daughter suggested I try Arbonne because she turned her weight gain around. She trimmed down using their products. She lost thirty pounds in three months. I’m extremely proud of her accomplishments.
When I was a Fireman/Emt we learned how to quickly size up the fire scene. As an EMT I learned patient assessment. I often used those learned techniques in order to help me battle my own fires or health conditions. As a fireman in order to extinguish the flames we have to eliminate one of the three necessary elements of fire. The easiest way to put out a fire is to reduce the heat by adding water. Another way to put out a fire is to smother it by reducing the oxygen. The last part of the fire triangle is combustible material. So with that in mind, our disease is aggrevated by inflammatory foods,drink, and genetics. I use the same principles of the fire service to reduce the symptoms of psoriasis.
Last but not least I have to give credit to Abundant Natural Health. Their products are simply amazing. They developed products for the many types of psoriasis including Psoriatic Arthritis. I use them most everyday. Ocean Soothe gel and lotion contain natural ingredients and are available at: Www.abundantnaturalhealth.com
Good luck on your journey. I find I have to be consistent with treatment. If your having difficulty please reach out to me, I would be happy to help. You can leave a comment below. Psoriasis doesn’t define me and the definition will never consume me. You can be Overcoming Psoriasis too! Yours truly, Todd Bello
#psoriasis #OvercomingPsoriasis #psoriasiswarrior #psoriaticarthritis
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 firstname.lastname@example.org or Elle Ciapciak in Rep. Costello’s office at email@example.com 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