Diane was diagnosed with psoriasis in 1963, a condition no one had ever seen in the town she was growing up in. She experienced situations she doesn’t want others to live through, so she now advocates for others living with the same conditions she does. Here she shares her experiences after being diagnosed with psoriasis, how her support system has been a great help for her and how important advocacy is to her.
A Psoriasis Diagnosis in the 1960s
I was diagnosed with psoriasis at five years old in 1963. On my first day of school, I was not allowed to attend. It covered over 80% of my body. I was immediately taken to a hospital where I was quarantined. I stayed there for three months. The doctors in the town where I grew up had not seen anyone with this disease before. When I finally [received] my diagnosis, I was given the best care. Unfortunately, they didn’t know how to treat my illness, so I spent the next 40 years of my life covered in scales.
I have had psoriatic arthritis for 30 years, psoriasis for 56 years and fibromyalgia for three years. I [am currently seeing] a pain management doctor because [everyone] thinks the pain is in my head. I have a rheumatologist for fibromyalgia and psoriatic arthritis and a dermatologist for psoriasis. My goal is to stop the stigma associated with this disease. I cried for the first 40 years of my life. I had to stop crying and start doing.
A Growing Support System
My parents were my biggest supporters growing up. They always told me that I would be strong and beat this disease. No one knew how to treat [what I was living with]. I got erythrodermic psoriasis and my body just exploded in my 40s. I made peace with God because I didn’t think you could live like this. My skin was falling off in sheets and I was in the worst pain ever. I was scared to death.
I saw three doctors in one week; one actually said I don’t know what to do for you. I went online because I was at the end of my ropes. [That’s when] I found the National Psoriasis Foundation. They immediately told me to go to the hospital to seek medical treatment. They put me on [the] path that got me to where I am today. I started going to Capital Hill, I attend Town Hall meetings and started a very successful support group in the DMV area.
As I got stronger in mind, body and soul, I was able to grow. I have spoken in front of the FDA, along with attending conferences and seminars. My support has grown over the past 20 years and I have people who understand what we go though with this disease.
Advocacy and Blogging
I am passionate about helping others in anyway. My ultimate goal is to find a solution to anyone’s problem. I believe I advocate everyday in some small way.
I am very active in [psoriasis, psoriatic arthritis and fibromyalgia] communities [because I] was alone for so many years growing up with these diseases [and] I don’t want anyone to ever feel they are alone on this journey. I’m very passionate about empowering people to work together. I have an online support group and want people to speak up about how they feel. I want to educate others.
I am a blogger, patient advocate and speaker for psoriasis, psoriatic arthritis and fibromyalgia. I presently blog for Creaky Joints, The Mighty, Medium, Health Union and Patient Rising. I have been featured in Arthritis Today, Everyday Health, Arthritis Foundation, Black Doctor. Org, New York Times and Health Central.
I have spoken in front of the FDA about living with psoriasis and psoriatic arthritis and was ask to be on a panel with several dermatologist as a patient advocate. I go to Capitol Hill yearly to lobby and frequently speak at town hall meetings. I have been an active advocate for this disease for over a decade now. I ran a support group in the Maryland, DC and Virginia areas for ten years and I now have a online support group. I have volunteered for several organizations that vow to help find a cure for my diseases.
Advice and Inspiration
Be open and honest with people about what is going on with you. This would help ease people’s minds and they won’t have to speculate. Find ways to relax and clear [your] mind. This is hard to do, but it will take away some of the stress. Speaking from my own experience, I want you to know that I have traveled the same road. It will be okay. I am so sorry you are going though this, but you don’t have to go at it alone.
Remember, you are never alone. I am here for you.
Lives with psoriasis, psoriatic arthritis, fibromyalgia