Skin rashes, joint pain and kidney failure at age 30
Women my age usually focus on getting pregnant and taking care of their children. That's what I thought I would be doing at 30.
Instead, I have lupus and get depressed that I may not have any kids.
Sharmane, United States - Kentucky
I was diagnosed with SLE at the age of 24. I have had total hip and shoulder joint replacements but I feel fortunate that I do not have any organ involvement. For me, the worst thing about having lupus is the debilitating fatigue and body aches which have caused me to stop working as a Paralegal.
The good thing is that through my volunteer work with the Lupus Foundation of Kentuckiana, I have had the opportunity to help educate lupus patients and the public about lupus. What I wish everyone would understand is that a person can look healthy and be sick.
Diann, United States - Washington
In the spring of 1998, I got the answer to mine and my husband’s prayers, my biggest wish fulfilled; I was pregnant! In the 10th week of my first trimester, I woke up in the morning to find my left knee stiff and painful, it was the size of a small cantaloupe and hot to the touch. I went to see the doctor thinking I had injured it somehow while taking my daily walks. My physician said he couldn’t do much without an x-ray and to "wait and see."
Two weeks after my son was born, I went to see my doctor again and after a thorough evaluation he said, "You have arthritis, and I feel very strongly that it’s either Lupus, Rheumatoid Arthritis or both." He referred me to a Rheumatologist who confirmed the same primary diagnosis and started to treat me. It would be two more years of visits and treatment before he could confirm the diagnosis of lupus. At this time, my left elbow joint was "fused" I hadn’t been able to straighten my arm for 6 months, it would be another year of medication before I could finally straighten my arm, get up off of the floor by myself or even stay standing or walking for any long period of time.
It is now eight years later, and I found a group of medications that work for me. Plaquenil, Arava, and Celebrex. I went off my medications one time to have another baby, after my second son was born; I went into a 3-year flare. So, no more babies for me, I’m grateful for the family God has given me.
On my medication, I live with a very mild form of Lupus, I can’t be out in the sun with my kids, my hair falls out (I use Nioxin shampoo to combat this), I get chest pain and severe fatigue, rashes, mouth ulcers, and joint and muscle pain.
I don’t let it define me. I try not to dwell on the pain of everyday living because I know it could be worse and many individuals deal with worse pain than I experience on a daily basis. It is exhausting and on those days that my body reminds me that I have a disease, I cry; but soon after, I climb out of my self-pity and get "back out there" to live another day.
Érika, Mexico
My name is Érika. I was diagnosed with SLE in March 2004 and my life changed dramatically since that day.
Living with lupus is like having a shadow behind you all the time. I've worked since I was 18 years old (I'm 31 now) and this is the first time I've felt I'm no longer able to work, think clearly, or even have a normal life anymore. I feel as if my abilities have disappeared.
My family has suffered along with me, and my kids are the ones whom I'm most concerned about. I feel as if I’m not who I used to be ... I’ve lost my energy, my strength and most of all, sometimes I feel I’ve lost myself because of this disease. Right now I think I’m beginning to "control" SLE in my life ... or what it is left of it. I’ve had a lot of help and love around me, and I'm sure God is helping me. I do think there’s still hope for me and for many others like me who have been hurt by this awful disease, so I keep looking for it with all my heart and my mind.
Ayu, Indonesia
Ayu began to suffer the symptoms of lupus in 1988. Her symptoms included blackouts (fainting), high fever, ulcers in the mouth and extreme fatigue. These symptoms slowed down her daily activities, which at the time were mostly outdoors (mountain climbing etc). She then went in and out of hospitals and took many tests that provided no results. Finally, in 1994 she was diagnosed with lupus. She became deeply depressed, sad and frustrated when she realized that it was not known what caused it, there was no cure, and that it would definitely change her life a lot. At that time, lupus was affecting her lungs, liver, skin, eyes, and blood. She was losing her hair and suffering from bone/joint pain, severe fatigue, daily fevers, ulcers and painful breathing. These symptoms affected her daily activity level, including decreased strength in raising her three children while they were still babies. One thing is for sure, she has a dream that lupus will be well known to others in order to enable other lupus patients to know how to cope with life with lupus. All this so that they too can bring joy and value to their lives and others ... even when they have lupus.
Sherry, United States - Connecticut
I am 34 years old, and was diagnosed with SLE at the age of 18. I have at least one doctor's appointment a week (that's a slow week), and I spend one-third of my salary on doctor visit co-pay's and prescription co-pay's, due to all the medications I am on, and all the specialists I see. SLE slows me down, but it doesn't knock me down.
I wonder what all this medication is doing to my body, having been on most of them for 15 years. Can I have children? Is that why my liver & kidneys are failing? Are they what make me cranky, or is it the disease itself? These are things I need answered. Will you help?