50 years of psoriasis
Yep! I have dealt with this disease for 50 years!
Diagnosed at the age of 25 after the birth of my daughter. Luckily for me, I was living in Portland, Oregon. A new mother and only married for a year and a half, I was at my wit's end....ready to do myself in. I got on the phone and dialed the operator. "I know there is a National Arthritis Foundation, Could there be a National Psoriasis Foundation? I did not even know how to spell it. She said, "Yes....the number is 503 297-1545."
That is the day that changed my life. A soft-spoken woman answered the phone, her name was Beverly Foster. She asked if I could drive over to her office. I quickly said yes! I packed up my 10-month-old with a bag of potato chips in hand and drove our 1969, dark British green, Volkswagon Beetle over the Hawthorne Bridge to Sylvan. As I entered her office, I burst into tears!
First meeting with doctor
As my daughter crawled on the floor, mashing potato chips into her area rug, Beverly quietly interviewed me. She pulled out a piece of paper and wrote three doctor's names in a column 1., 2., and 3. She very carefully said, "I would consider one of these doctors and if I were you, the 1st one might be a very good choice."
We bonded that day in a way I will be forever grateful for. I served her during her last days on the planet as her nighttime caregiver. I served on the executive board of directors in the early years of the foundation. She wanted sufferers on the board. We were all young and passionately believed we could find a cure.
We testified before congress to get psoriasis and psoriatic arthritis approved as a disabling conditions for social security benefits. We held garage sales, we spoke before cosmetology associations, we had a newsletter and the office was staffed by only three people in those days with volunteers like me who just wanted to connect with other sufferers and offer our time and efforts to advance research to find a cure. The foundation in those days had a budget of thousands of dollars, now the foundation has a budget of millions and we have biological drugs that help sufferers clear! Even though the cure is still not here, we have so many more options for treatment and they are no longer laughing about the "heartbreak of psoriasis", as they once did on television. 8 million people were not laughing! We brought it to the attention of the nation and medical researchers. The foundation garnered support and money for research and it is still moving forward on behalf of all of us.
Current state of psoriasis
I started in my forties with Enbrel. I currently am on Simponi as I also have severe psoriatic arthritis with many fusions and lots of joint damage. I am swimming laps, as I have done all my life, and due to God's grace am still walking. I always thought I would be in a wheelchair by now. I encourage anyone currently suffering from this disease to never give up! You are your own advocate! Seek the medical attention you deserve. Do not let doctors just hand you cream, prescribe methotrexate, tar, and cortisone, and tell you there is nothing else they can do. Keep the faith. Contact The National Psoriasis Foundation in Portland, Oregon. They are there to help. I celebrate my 75th birthday in a few days and I am still truckin'! Go to Facebook: Avette Gaiser and drop me a note! Ask to be my friend.
Do you get frustrated with your psoriasis treatment plan?