Last month I had the privilege of being asked by the National Psoriasis Foundation and Novartis to share my story as a psoriasis patient at the American Academy of Dermatology 72nd Annual meeting in Denver, Co.
You can read all about my Colorado fashion HERE.
To say I was ecstatic, was an understatement. I love participating in opportunities to being more awareness to psoriasis and psoriatic arthritis and the National Psoriasis Foundation. At this conference I was invited to participate in the first ever Novartis #PsOAAD Tweetup where my patient experience insights that I provided were instrumental in helping journalists further understand, and better inform their reporting on the psoriasis patient experience.
A little about me: I have been living with psoriasis, for little over 14 years. I was a junior in high school when I was first diagnosed with psoriasis. For those who don’t know, psoriasis is an incurable, non-contagious auto-immune disease that appears as red, patchy, scaly flakes on the skin. Ever since then, I have been on a journey to be educated and well-informed on this disease and become as involved as I can be. You can read more about my journey living with psoriasis HERE.
I am also involved with the National Psoriasis Foundation as a volunteer mentor and coach as a part of their One-to-One Program, since 2009.
“Psoriasis One to One Mentors are people with psoriasis and/or psoriatic arthritis who have been through what you are going through and are thriving. They are trained to provide information and emotional support to anyone who has questions or is struggling with their disease.”
I absolutely love the opportunity to help those newly diagnosed or even those who may be experiencing a bad flare up or just need someone to talk to. We are people living with psoriasis who know exactly what it’s like when a flare up happens, or if someone is scared to go to the salon because of the flakes on their scalp, or embarrassed that swimsuit season is coming and they still have visible spots or just need someone to talk to. No matter the problem, we’re a resource, a lending ear and a support system.
That was the main goal of sharing my psoriasis patient experience. I want people to be aware of the resources out there like the NPF mentor program; and be more informed on the disease and how many people are affected with it on a daily basis – that would be 7.5 million, yes million, people have psoriasis. Psoriasis isn’t contagious, but knowledge is. The more people who know, the more awareness we can bring to this disease.
I think it’s also important to develop a great rapport with your dermatologist. They are there to help you and find the best treatment’s out there for you. So go ahead, open up! There are six things I always tell my mentees’ to discuss with their dermatologist:
- What is your quality of life? Are you happy? Are you depressed?
- How much stress are you under?
- Has there been any major event(s) in your life recently? A big move, a death in the family, were you laid off, a recent split from your significant other?
- How happy are you with your current treatment plans?
- Do you have a good support system?
- What is your diet/lifestyle like?
These are a great jumping board to starting off the conversation with your dermatologist.
Bringing awareness to this disease is one of my biggest goals while being apart of NPF. That’s why this year, I have signed up as a team captain for the Walk to Cure Psoriasis on May 10, at Discovery Green.
The Walk to Cure Psoriasis raises funds for psoriasis and psoriatic arthritis research, advocacy and education.
If you have psoriasis or know someone who does, ask them about it – chances are they want to talk about it but no one has really ever given them the chance. I hope this post inspires you to get involved in some aspect.
Please send me a message or leave your comments below – would love to hear from you!