Providing Answers, Support and Hope in Pennsylvania, Delaware and Southern New Jersey

Mother & Daughter Fight Lupus Together 

Sandra
Six years ago, I woke up one morning with debilitating pain.

One month later I was diagnosed with lupus.

This is rare for many people living with lupus, as the average diagnosis takes 6 years. I was devastated to hear that I was going to live with chronic pain forever with a disease that has no cure. I was lost, deep in my head. Then I found that Lupus Foundation of America. They helped turn my thoughts around and they continued to support me when I was diagnosed with pulmonary fibrosis a few years later. I’m that severe case I was told about.

Pulmonary fibrosis also has no cure; it is a relentlessly progressive lung disease that commonly results in respiratory failure and death. As it turns out this isn’t the most horrible thing that could happen.

Katie
Last year at the age of 15, I had a seizure. I don’t remember any of it, but my mom and sister told me everything later. I was the healthiest kid growing up, so we didn’t understand what caused this. I spent 2 weeks in the hospital with a 104 degree fever and a rash from head to toe that wouldn’t go away or get better. I don’t remember the first couple days in the hospital, or the constant testing, from kidney biopsy to brain scans to lots of blood work to a spinal tap. I was told I was hallucinating. It was all so scary.

When I finally came back, I couldn’t make sense of anything. It was unclear what was going on around me and the lost memory was hard.

But the worst part of it all was when they diagnosed me with lupus. I thought I was dying, that my life was over. I screamed "no please" because I know lupus. I know what it has done to my mom. I’ve seen her pain and bad days. I know she may die without a new lung. I was scared for my future. I need my mom with me to take care of me. I need her especially now. I need her with me to teach me how to fight this, to help me become a lupus warrior too.

Sandra
So now, THIS is the worst thing I have to live with, that my daughter has lupus too. Some people fear monsters around them; we live in fear of the monster inside our body. I worry if research isn’t funded, I will not have a chance to live, to raise my four children, to see them grow. My life is important to them, it’s important to me. I want to live, I want to grow old. We need to find a cure so my daughter can also grow old.

I will continue to fight, I will be a warrior until a cure is found. I am taking ACTION!!! I am a support group leader and advocate so that I can help others not feel alone and raise awareness of this terrible disease.

LUPUS WARRIORS TOGETHER!

By raising money for the LFA research, programs and services, WE are doing our part for all affected by LUPUS, now we need you to do yours.

Please make a gift today to provide programs and support to the Philadelphia Tri-State lupus community and to fund research to find a cure for this devastating disease.

Thank you!

-Sandra and Katie