We are non-profit, mostly voluntary health organization dedicate to raising public awareness , educating and supporting those affected by lupus, finding a cure, educating health care professionals, and promoting, encouraging and providing funds for Lupus research.
My name is Steffani. I am a daughter, a friend, a girlfriend, a nurse. I am
a typical girl living in Cleveland, Ohio at the age of 24. I thought
nothing could penetrate the safety of my world, as most young adults tend
to imagine. Life, however, plays by its own terms, and a diagnosis of lupus
came knocking when I least suspected it. What a birthday present - 23 years
old and diagnosed with systemic lupus. My world was crumbling around me.
The next few months brought nothing but heart-wrenching news. My friend was
killed in an ATV accident, my best friend’s step mom succumbed to cancer,
my cat ran away, and I was a new nurse. I felt as if I was being punished.
For what, I wasn’t sure, but the pain was more than I could handle. My body
was changing- my hair started falling out, the rash on my face, arms, and
chest never went unnoticed by a stranger, my bones were aching, depression
was hitting hard, 20 lbs of body weight vanished. I’ve learned, however,
that in order to rise above the sadness, sometimes you have to hit rock
bottom to push off the surface and start your climb. But the thing that
became clear was that I didn’t have to climb alone. Family and friends
banded together to give me their hands. I was reminded how powerful love
can be in the face of darkness. I was reminded that I’m a fighter. I was
reminded that survival is what we put forth. I was reminded that I couldn’t
give up. I feel now as if I’ve been given a second chance to be a better
person because of my diagnosis, to make every day count. Too much time is
wasted on being selfish, lonely, angry, guarded, and afraid. Every song has
an ending, but that’s no reason not to enjoy the music. Living with lupus
has taught me to take better care of myself- to be healthier, kinder, and
to love and laugh more often. Life is a precious commodity. Lupus has
taught me to embrace that idea. To appreciate my loved ones without fail,
to believe that I am a strong woman, and to never stop dancing when
hardships threaten to turn off the music. My name is Steffani, and I’m
proud to be a lupus patient.
Walker of the Week : Jessica Tufts
Her Story In Her Own Words
When asked to share my story of why I signed up to walk in the Walk for Lupus Now community event, so many reasons came to mind. I am walking in support of two of my sorority sisters who are battling Lupus. One of the founders of my sorority, Nu Omega Psi Sorority, Inc. and my line sister have both been diagnosed with Lupus. I have seen firsthand how this disease affects them both physically and mentally, and that alone drives me to raise funds and awareness for this unpredictable and life-threatening disease. Bringing awareness to Lupus is extremely important to me and my sorority sisters.
Nu Omega Psi Sorority, Inc. promotes community, service, and sisterhood by actively supporting various community events and organizations. The Lupus Foundation of America is one of our main philanthropies and this year we have participated in the Walk for Lupus Now event in three different states. While walking in this event not only will I be walking for those affected by Lupus, but I will be representing my sorority! This means a lot to me because Nu Omega Psi was recently founded in 2007, yet we are consistently growing and staying true to our principles. We continue to accomplish many things as a black-founded, independent, service and social Greek-lettered organization. We strive to always promote the importance of service, education, and sisterhood through our journey as a sorority for many years to come.
My name is Courtney Clough and I was diagnosed with lupus in early 2004. My disease started off as cutaneous with some very mild systemic symptoms. I was immediately started on Plaquenil and had an allergic reaction to it. I was switched to Methotrexate which made me very sick and gave me bald spots. I tried to give the Methotrexate a chance, but I felt worse on it than I did without it. We found that Imuran was what worked best for me. I was under very good control and pretty flare free until the Summer of 2011. I went to an outdoor festival and thought that wearing sun block with repeated applications was enough. I subsequently spent 10 months in flare. I was started on Benlysta in December 2011 and my rheumatologist and I decided that I would start Prednisone in May 2012. Like most Lupus patients I have my good and bad days. My good are really good and my bad days are really bad.
Today I am doing pretty good. I push through the disease process and try not to let it run my life. When I get tired, I go to bed. To add to my story I also got sober in June 2011. I have been sober for a little over a year and am working through a program of recovery. I hope that in the future I will be able to help other alcoholics and addicts who are dealing with Lupus.
I walk to help fund research, education programs and to prove that just because I have Lupus does not mean that I am always sick. I really enjoy the positive energy at the Walk for Lupus Now events and am really excited for the 2012 walk.
Theresa DuBroy : Her Story In Her Own Words
I am walking for Lupus because it is something I can “do”. My daughter, Kristen, 22, was recently diagnosed with Lupus. It took the doctors eight months to make the diagnoses. Watching my daughter fight through headaches, fatigue, chest pain, joint pain, in and out of the emergency room and many doctors telling her everything was “normal” was very frustrating and heart breaking for me. I wanted to “fix” it…I still do. I know I can’t fix it, but I can walk. I hope “walking” will raise awareness and money to help Kristen and others with Lupus.
My name is Elizabeth Phalen, my family calls me Betsy. I am 47 years old and was diagnosed with Lupus 8 years ago, after about 10 years of misdiagnoses. I live in Cleveland Ohio. I am a proud single parent of a beautiful daughter who is a senior at Charleston Southern University, SC. Along with Lupus I have Asthma, Spinabifada, Raynauds disease, Hashimoto’s disease & Fibromyalgia just to name a few. I’ve given up a lot since Lupus became part of my life, my favorite was skiing, then about 3 years ago I had to sell my house and move into an apartment. I felt robbed of life and didn’t care about anything. I felt sorry for myself even though I know people who are way worse off then me; example my brother who was born a paraplegic from Spinabifida.
One day my oldest sister sent me 4 angel statues that spell out HOPE. On the bottom of each she put our names, hers, my other sister, my daughter and mine. I hated those angels for a long time until a cousin found a little cross that had HOPE written on it and sent it to me, she said she just felt she should. So I adopted HOPE. This past March for my 47th birthday my daughter talked me into getting matching tattoo’s, by the way she does not like tattoos but wanted to do this for me, a sign that no matter what happens in life there is HOPE and she will always remember me and our struggle with Lupus. We have a butterfly carrying a purple ribbon with HOPE written next to the butterfly. I have decided that lupus will not dictate my life but I will will rule my life in my way and do the best I can. I fight daily to stay positive and push myself forward.
This will be my 3rd year walking & I’ve meet wonderful, caring people with and without lupus. I have named my team “Betsy’s Bulldozers” a nick name from when I was a child, my siblings say that if you got in my way I just bulldozed you over. I think that is my true mantra in life, “push on”.
Tiffany Thiede
Hi My name is Tiffany. I was diagnosed with Lupus nephritis SLE in June of 2006. I had no idea what was wrong. I was very weak and had gained 30 lbs of water weight in about a month and really just had no idea what was happening. I was very lucky to be diagnosed fast, though. No one else in my family has it as far as I know, and I do come from a big family. I have a great doctor that has been a part of a lot of great research with OSU and because of him I have not had any major relapse since then. I do know to stay out of the sun and rest often. I have come to realize everything happens for a reason and you just have to fight through life no matter what is handed to you. You are always strong enough to handle it.
Melissa Mackey
My name is Melissa Mackey and I was diagnosed with lupus 22 years ago at the age of 13. I was originally diagnosed with mixed connective tissue disease, which is a combination of lupus, rheumatoid arthritis, and scleroderma; however, as I grew older and entered into my 20’s the lupus became quite more prevalent and I was diagnosed with lupus nephritis. As one can imagine, being a young adult with lupus is difficult. In the course of my life I have seen a multitude of specialists due to the fact that lupus affects so many organs. I have been on a daily regimen of medicine since I was 13, and at times I was taking 5 different types of drugs. I have also had my fair share of lupus flares. In a few of those cases, they were severe enough to land me in the hospital. That is the thing about lupus - it can be so unpredictable, and you have to continuously be on guard. However, with all the ups and downs that this disease can bring, I have learned that I am stronger than I ever could have imagined and I do not and will not let it hold me back. I have a great family that has supported me from the moment I was diagnosed and they have been with me every step of the way, in good times and bad. I married a wonderful man two years ago, and we intend to start a family of our own soon. I walk for lupus because I’m a fighter and I won’t let this disease get the best of me or anyone else who suffers from it.
Top Columbus
Fundraisers To Date:
#1. Paula Warner: $510.00
#2. Chantelle Gignac: $460.00
#3. Cheryl Ryan: $440.00
#4. Teresa MacCartney: $400.00
#5. Tyler Sims: $375.00
Now that you know where you stand, take advantage of our resources to make sure you win that prize! (and raise awareness too!)
Christi Block : Her Story In Her Own Words
My name is Christi Block and I am walking for my 17 year old nephew, Tyler Sims. Tyler was diagnosed about a year ago after a few years of battling the unknown. Tyler has had so much taken from him because of Lupus and Antiphospholipid syndrome. I started team Simmer Supporters to help boost Tyler=E2=80=99s spirits and to show Tyler how much support he has. I started making butterfly hair clips for donations to our team, and have raised a significant amount in doing so. Our whole team has done a tremendous job at raising money to help bring awareness and to help find a cure. I pray that a cure is found soon to help all those affected by lupus. Thank you to all of you who have decided to help fight lupus. We cannot achieve our goals and spread the word about this disease without each and every one of you!
A little competition never hurt, so this week we’re letting everyone know who’s in the lead this week for fundraising. Did you know there’s a prize for the top fundraiser? Be sure to check out our FUNdraising ideas so you can pull into first!
Top Downtown Cincinnati
Fundraisers To Date:
#1. April Gulisano: $645.00
#2. Melissa Bell: $405.00
#3. Kelly Kuehneman : $390.00
#4. Michelle Goodridge: $170.00
#5. Cari Cavanaugh : $150.00
Now that you know where you stand, take advantage of our resources to make sure you win that prize! (and raise awareness too!)
