Advocacy: Celebrity advocates
Letters to LeAnn
Disclaimer: Letters have been edited for brevity, clarity and typographical errors. Opinions presented here are solely those of the authors and not of the National Psoriasis Foundation. Information regarding psoriasis treatment in these messages is purely anecdotal and represents the experiences of individuals.
Thank you so much for using your celebrity to further the cause of psoriasis treatment. How very sweet and brave of you. I myself do not have psoriasis, but my late wife had it all of her life. She struggled with it off and on to the end. I know you have your emotional scars also. I still maintain my membership with the National Psoriasis Foundation as a tribute to her and will until I die. You are truly sensational as a singer but my appreciation for you as a person soared when I saw what you so unselfishly did for psoriasis sufferers everywhere. I just wanted to take this opportunity to say THANK YOU.
—Phillip, Texas
I was in the audience last night for your performance at the South Shore Music Circus in Cohasset, MA. It was wonderful. I had the pleasure of seeing you at Mohegan Sun Arena a couple of years ago for New Year's Eve as well. Awesome! I do want to share with you that it appears that my 2-year-old granddaughter has psoriasis. As you probably know only too well, they are starting with calling it eczema which is what they did with me when I was a child. Thank you for all you are doing to support those of us who suffer every day and to try to help children, like my granddaughter, from suffering as well. We need a cure.
—Ellen, Massachusetts
I have lived with severe psoriasis for over 20 years. The FDA recently banned the use of the medication that was working for me and I am going to go backwards and even be worse than ever before. This puts a strain and stress on me that some days are hard to deal with. I will never quit looking for a solution or something that works. My father has it too and would love to find something better for him as well. Just wanted to tell just a little of my story and say THANK YOU!!!!!!! Any extra help to find a solution is so much appreciated I can't even put it into words.
—Chris, South Dakota
Thank you for your involvement in the Psoriasis Foundation. I have been fighting psoriasis for 20 years and psoriatic arthritis for seven years. Two years ago I was able to get on disability (SSA) because I am unable to work. My rheumatologist has put me on a biologic drug and it works good but my insurance only covers about 5 percent and this medicine is expensive. Wouldn't it be good if more important people got involved in this fight? My hope is that Congress will approve more funding and make biologic drugs more affordable. Thank you again and God bless.
—Jeff, Illinois
It's about time someone with a voice (so to speak) takes a stand for cure. I cannot tell you how negative an impact the disease has had on me my entire life. I have had it since I was 8 years old and have had arthritis since 10. I have literally had people come up to me and comment, "Eww, that is gross, what is that?!" I do not wear shorts, skirts, or dresses. When asked recently, "What is the worst thing about it?” my answer came from the heart. I took my finger and put it on my temple. A chronic psoriasis patient hides who and what they really are inside. How many with potential have been put in a corner? Not enough mind has been paid by the “right people,” the ones who have pull. THANK YOU!
—Jeannette, West Virginia
I have asked my state representatives in South Dakota to support this legislation (the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2009). I have not only been affected by psoriasis & psoriatic arthritis but I now have grandchildren who suffer from psoriasis. I have always been a fan of yours & am honored to have you as a spokesperson asking for more government support to help find a cure for psoriasis. Thank you for your help.
—Sherry, South Dakota
Thank you for your personal support. I have lived with both diseases most of my adult life (I cannot say all of my adult life because I am not finished living yet). You never know from one day to the next how severe the pain of psoriatic arthritis will be, but you do know there will be pain. And for those of us who do suffer, we know that not only does the disease take its toll on the body, but because of the pain we constantly endure, it also begins to take a toll on our minds through depression and other manifestations of mental illnesses. I am behind you 100 percent.
—Roger, Georgia
Thank you for your dedication to be a voice for psoriasis and psoriatic arthritis sufferers. My daughter is 19 years old and has suffered with both of these conditions for six years. She recently had a severe infection that resulted in hospitalization: She was unable to walk without assistance and temporarily dropped out of college. Her sweet spirit and contagious positive attitude were in jeopardy during this trying time. She is now on the road to recovery. We have a wonderful group of doctors who are taking great care of her. However, the potential of damaging her body with harmful medications is always present. Finding a cure for this horrific disease is of utmost importance. I will write to my Senator and Congressman regarding this bill.
—Joni, Alabama
Thank you for taking time to speak on behalf of our children who suffer with a disease most people just think of as dry skin. My son, Justin, is 12 and has suffered for three years. He is much better than a couple years ago (when he would bleed through his clothes at school and we had to change sheets nightly) but still suffers through weekly shots and pills that upset his stomach. He is such a trouper and I am proud of how he handles his illness, but it still carries a stigma. Thank you for bringing attention to the children who have psoriasis by speaking on their behalf to our legislators.
—Carrie, Kentucky
My beautiful 16-year-old daughter suffers from psoriasis. She has had to grow up a little quicker because she has to deal with the questions like, "What are those marks?”, and “How do you cover all that up?" and give herself two shots each week. Thank God we have good health care insurance. I don't know what we would do if we didn't. She was in terrific agony. It itched, it hurt, and it made her feel less than she is. I feel for the people who do not have the same coverage that we do. I honestly don't know how they manage. FIND A CURE!
—Deborah, Virginia