Kendra's Story

Table of Contents

My name is Kendra and I suffer from life-threatening SLE. I am 34 years old and the founder of Cure4Lupus.org and Cure4Fibromyalgia.org. I first started having Lupus symptoms at age 13, I had joint pain and swelling, headaches, and stomach problems, especially when I was under stress. By the time I was 17 it was apparent that I was suffering from something more than a string of unconnected illnesses. The joint pain and fatigue progressed to crippling at times, I began missing work, losing friends, and separating from family. 

At 18 I finally got insurance and began seeing a doctor. He told me that based on my lab results Lupus was likely, but more tests needed to be done. I lost my insurance and for the next 6 years I went through many flares and remissions, mostly untreated. I missed a lot of work, sometimes for months at a time, I lost many friends, and even my family could not understand what I was going through. I didn't worry too much about not being treated because I had been told the treatment was steroids and I didn't think the side effects were worth relieving joint pain and skin rashes. I had no symptoms of the damage being done to my organs.

At age 24 I was diagnosed with Premature Ovarian Failure secondary to the Lupus, causing me to go through menopause at age 24. My flares were getting longer and closer together until I was counting the good days because it was easier than counting the bad ones. I eventually had to quit working and file for disability.

I finally got the official Lupus diagnosis in early 2004 at age 26. They also discovered that there was severe damage to my kidneys. After a kidney biopsy, I was diagnosed with WHO Class VI Lupus Nephritis. My kidneys were scarred and there was nothing that could be done to treat it. I was told that my kidneys would fail and I would need dialysis and a transplant, it was just a matter of time. I was immediately started on the steroid, Prednisone. A few months later I was also started on CellCept, a chemotherapy drug.

After moving back to Iowa, getting on a program for the un-insurable, and seeing some of the best doctors in the world at the University of Iowa, I went into a remission that has lasted for the better part of 6 years now. Unfortunately, that didn't mean I felt better. In order to get there, I had to more than double my dose of chemo, and increase the Prednisone, multiplying the side effects. I have had allergic reactions to drugs, drug toxicity, tens of thousands of dollars in medical debt, excess hair growth, stretch marks all over my body, I gained 90lbs., had Shingles and Post-Herpetic Neuralgia, several hospitalizations, chronic daily diarrhea for a year and a half, near constant pain, thinning hair, reduced resistance to infection, Fibromyalgia, Hypertension, high cholesterol, Tachycardia, severe insomnia, Lupus "brain fog", depression, anxiety, paranoia, edema, chronic nausea, Hyperthyroidism followed by Hypothyroidism, Hyperparathyroidism, Sleep Apnea, daily headaches, double vision, and Idiopathic Intracranial Hypertension that threatens my eyesight. I take pills 5 times a day, at least 55 pills every day, most of which just to counteract side effects of the Prednisone and CellCept that are keeping me alive.

I still have constant ups and downs but my symptoms are somewhat under control.  After fighting over 6 years I am on Social Security Disability. I am now a Lupus Activist spending my limited energy trying to raise Lupus Awareness and money for Lupus Research so that we can get a real cure rather than more meds that are very nearly as bad as the disease itself.

Now that I have talked about all the bad things it is only fair to mention the amazing gifts I have gotten from having this disease. I know that sounds strange but, I am honestly thankful for the patience it has taught me, and how it has taught me to live in the moment and to make the most of every day. I am most grateful for the strength I have built, I know I can make it through anything! Accepting that Lupus changed what kind of a person I was has been the hardest part of all this, but I now know that I was never intended to be that other person anyway. I have become so happy, fulfilled and proud of the person I am today. I can no longer imagine not having this website and it's supporters in my life!

Des Moines Register article about Kendra.