Walk Ambassador Donna Emery

 In Links to Lupus News, Story Sharing Project

2021 Virtual run, WALK, ride ambassador, Donna Emery. Team captain of Lupus Fighters 2021.

What kind of lupus do you have?
My Lupus is called SLE, Systemic Lupus Erythematosus.

When was lupus diagnosis?
1999 by my doctor, Dr. Neompoceno.

How long did it take for a correct diagnosis?
Wow! Good question. I believe it was several years before I received the correct diagnosis and several doctors later.

How has your life changed?
My life changed quickly because I was 12 or 13 years of age, having so much pain and bleeding for weeks. We never knew what was going on with my body until I was so much older.

Does anyone else in your family have lupus?
No, I believe I am the only one with Lupus. I do have family members that have other autoimmune disease but not Lupus.

Do you find support from your family members?  If so, how?
Yes, I do have support from family, friends and my lupus support group, Lupus Connection. I have conversations with my mom and sisters.  My family is great because everyone understands what’s going on with me since I was a kid, and they listen and pray that I feel better.

The Lupus Connection is wonderful because you can always call a member and compare notes about medications and body aches. My friend Kay…Just checking… how do you feel today? Kay Mimms is a great friend to have, she gets it.

How did you first become involved in the Illinois Lupus Walk and the Virtual run Walk ride?
Kay Mimms and I became friends at our Church Seniors group meeting. Kay told me about her having Lupus and I shared that I have Lupus too. So, she began to tell me about Lupus Society of Illinois and the organization.

I joined her team for many years. I told Kay I was going to have my own team and she was so positive about it.  It has been about 5 years since I had my own team, Donna’s Lupus Fighters.

Why do you think the Illinois Lupus Walk and the Virtual run Walk ride is important?
My goodness… This Lupus Walk and Virtual run Walk is so important because the more we get the word out through media and community affairs the better. I miss visiting different church events because of COVID-19, we no longer set up tables or pass out brochures or answer questions about Lupus. This is really sad and hard for the various LSI group because we make a connection with the people in the community. 

How do you make the Illinois Lupus Walk and the Virtual run Walk ride personal?
The Lupus Walk and Virtual run Walk is personal because I have the illness. My family and friends know that I would continue to fight every day for my life and any other person struggling with the Lupus challenge.  I hope we find a cure for this painful illness.

As a Team Captain, what are your goals?
My goal is too high, but anything is possible. My goal changes every year.

It may start out low but increase rapidly. I remember I was a little concern, but I was not worried about my goal one year. I believe in my family, friends, co-workers, and ex-bosses and that they will come through for me. I received so many blessings, but I do remember one special gift from one of my ex-bosses who donated $1,000 that year. I believe that year I reached an amazing goal, way over my projection. I will never give up! No donation is small. Thank you so much for giving another year!

My goal is to stay positive, laugh a lot and never stop fighting Lupus. Yes, I am a Fighter! I am a Fighter! I am a Fighter!

Has a lack of public awareness about lupus affected your quality of life?
No way I know – I have a great support team, family, and friends to keep me updated on any Lupus media updates. Also, I have the LSI family to keep me in the loop. 

How has the LSI helped you cope with lupus?
I love the newsletter and the webinars. I know I have missed several webinars, but I love that you continue to bring great doctors and speakers to help us understand Lupus.

What would you want the world to know about lupus?
I would want the world to know that Lupus is painful, and it does not care about your age, color, whether you are a woman, man, or child it affects everyone one way or another.  We are dealing with Covid-19 as well.  I know having Lupus for over 35 years is a blessing because I am still here.  We pray for a cure every day.

Join Donna and hundreds of others by participating in the Virtual run WALK ride for LUPUS! www.lupuswalkil.org

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