I was diagnosed with lupus in December 2011. I live in West Deptford, NJ with my husband and our 4 sons. I primarily have lived a healthy life with no major health issues other than a minor heart murmur. I have watched my father struggle with lupus for many years. I never thought that it would be me. When I first found out, I have to admit, I was dismayed. It took a while to get used to the idea of having to see a rheumatologist and take medication on a regular basis. The feeling of being a burden to my family made me sad. Unfortunately, I know a lot of people with this disease and some that are no longer with us because of it. A lot of people are ignorant to what it is, what it does, how it affects you and so on. I have now dedicated my time to the hope for a cure and to educate more people about it. Those with lupus have a motto, “I have lupus, but it does not have me.” I will continue to fight for more medication to treat this disease. I firmly believe if we stay focused and fight for what we believe in, that “together we can be lupus strong!” I am the type of person who has always done for others and will continue to do so, however, maybe now it is time to do something for me. I am going to enjoy my life with my family and watch my children grow up. After all, life is short and taken for granted by so many. I truly believe we are here to make a difference and for a purpose. Sick or not, I plan on doing just that.
~ Jennifer Richardson, Jennifer's Lupie Groupies
Immediately following my diagnosis, I was having a difficult time. I was questioning everything around me. I was not only in a physical upheaval, but also a spiritual and emotional crossroads. I now see pain as an old friend. It is not the pain that will kill me. I am no longer afraid of the blaring all-consuming ache that lives inside my joints and muscles. If you take away the fear in any situation, it fails to imprison you. The pain no longer has total control over my body and mind. I never counted on the limitations I now have on my life. My dreams have been put away and my body betrays me a little more with each passing day. This disease is unrelenting and all-inclusive. There are so many young women who suffer through unpredictable flares and stumble through a barrage of medications, hoping that with each new trial, she will begin to experience releif, to see improvement in her disease. The problem is that there has only been one new FDA-approved drug specific to lupus in over 50 years! This is why we need your help in raising money for a cure.
~ Erin Castaldi, Butterfly Warriors
The last 20 years have been fraught with losses, changes, and constant adjustments to my body's needs. My body dictates my life, and yet it is my body that continues to fail me. I cannot paint a pretty picture of lupus - it is ugly, it steals, and it hurts. The adjustments I must endure range from comical to life-threatening. I used to be extremely physical - I could do just about anything, and I did. My self-worth was in my physical abilities. Now I am lucky to be able to walk my dog and not fall down. Lupus used to be depressing, lonely, isolating. I knew of the LFA and read their magazine, Lupus Now, but I still felt alone. With pressure from a friend, I joined Facebook, found the LFA online and was immediately connected to others like myself. All of a sudden, I was no longer alone. Now I know hundreds of people with lupus and we chat all the time! I read about the Walk to End Lupus Now South Jersey and decided to do something about it."
~ Jill Gleeson-Doherty, South Jersey Sweethearts
My mother was diagnosed with lupus about seven years ago, and has been through so much since. About five years ago, she had a hip replacement. None of the doctors could figure out what was going on with her until a physician friend of the family tested her for lupus and suddenly, it all made sense. It rips my heart out every day to see the struggles she goes through and that there is nothing I can do to help her. We have always struggled as a family, and we have been through a lot of turmoil to get us where we are now. The biggest thing for us to remember is to never give up. We are finally at a point in our lives where we can look back and just say "we did it." My mom wakes up every day, living her life the best that she can, and we do everything we can to help her through it. I've never been more proud of my mother in everything she does and everything she still does for her family, friends, and loved ones. I love her with everything I am. She is my hero, and I hope one day to be the woman she is today.
~ Megan Lewis, Butterflies of Hope
We are walking in loving memory of my mom, Iris "Potchie" Fricano. She was diagnosed with lupus at age 13. Though she was ill, she managed to live her life as an unforgettable daughter, sister, mother, wife, and friend. Her family and friends were the very center of her life. Iris lost her battle with lupus in November 2004 at age 42. To this day, her friends and family will never forget the legacy she left, lessons she taught, and memories she created. Her spirit continues to live through on through the positive influence she left on all who knew her. I created this team for a chance for all of her friends and family to walk in honor of Iris and all those who have been affected by lupus. Participating in events like the Walk to End Lupus Now is something that Iris would not miss for the world. She was (and still is) a hero to many. She was always there to lend a helping hand and support anyone in need. Now it's up to us to be there for people that are affected by lupus and need our help. I look forward to walking with my family, friends, and all who will be participating in the Walk to End Lupus Now!
~ Jessica Fricano, Purple for Potchie
I was diagnosed with SLE in June 2007, which left me paralyzed from the waist down, confined me to a wheelchair and told that I may not walk again. I would never have imagined in a million years that I would be in a wheelchair, not able to stand, walk, run, cook, clean, drive, play sports, or even work at the age of 39. This devastating news changed my life forever. My son was only 12 years old, and he had a hard time focusing in school, not knowing whether I was going to be able to walk again. My husband and other family members also had a hard time coping. Through prayer, faith, determination, and a positive attitude, I am now walking with a cane. I walk to let others living with lupus know that despite what your situation looks like, continue to maintain a positive attitude and continue to fight. There are so many people who cannot walk to support the cause. Although I am living with chronic pain every day, God is good, and I thank Him everyday for allowing me to put one foot in front of the other and walk again. I'm determined not to let lupus get the best of me. I believe my name Kim stands for Keep It Moving, and that's what I plan on doing!
~ Kim Dunn, Keep It Movin' Kimi
Having lupus is a daily battle of its own; having to take over 20 pills a day to have somewhat of a normal life is another. Being a mother of two who has tried several different medications and still experimenting to find the right one that will help me be able to enjoy my family as much as I can. I walk for myself and others who have the daily struggles of living with this horrible disease, I look forward to a cure.