General
World Lupus Day May 10th
May 4, 2024
in General
Let wear purple on Friday May 10th Many transplant patients havre been diagnosed with Lupus
Tagged:
1 - 6 of 6 Replies
I did not know that Friday is World Lupus Day! I will certainly wear my Purple! I actually have a purple "straight out of Transplant" t-shirt. I will wear that one! Lupus was not my initial diagnosis prior to my transplant but it still feels somewhat appropriate.
@TServold I know through my journey the number one question was do you have? Lupus? I was tested many times, but there was never a diagnose. I was told it’s a possibility that I had two autoimmune diseases that were mixed together which made it difficult to diagnosisI know Transplant patients have lupus so I thought it was appropriate to spotlight it. Purple just happens to be my favorite color.
Thank you for bringing attention to Lupus! I was diagnosed with Lupus when I was 16, in 1997. Both of my native kidneys failed by the time I was 22. Luckily I had, my dad, my living donor donate a kidney which I have had for 18 years. I've learned over the years how to keep flares to a minimum. It can be so difficult to diagnose because it mimics so many other illnesses. The extreme fatigue was the first symptom that I experienced. Once my mom realized I wasn't just being a moody teenager, she took me to the doctor and that is when they noticed the major issue with my native kidneys. At 16 I had a renal biopsy on what was remaining of one of my native kidneys and they discovered the inflammation.
The plus side of taking anti-rejection medications for the transplant is that those can also help the lupus stay quiet. That and maintaining a plant-based diet has helped with all the lupus inflammation over the years. My heart goes out to anyone with Lupus.
My aunt was just diagnosed with Lupus and I have no idea what the expect for her. Shes in her 80s but has always been very healthy and active. Up until a few months ago she walked 5 miles a day ,mowed her own yard, and cooked for everyone she knew. But in few months she can’t walk, her hands hurt so bad it hurts to hold anything and her vision is impaired. I don’t know how to help her cope. She’s seeing 2 doctors. It sounds like there’s hope for her am I correct? Anything I can do to help her get relief from the stuff joints? Thanks from fir sharing.
It can be a tricky illness. It can come and go. Sometimes I am in remission and sometimes I have a flare. Those are usually the terms used. You have to figure out the triggers and what causes the symptoms to get worse. For me, it's usually stress. When I don't take enough time for myself to rest. Heat usually helps me with the hand pain. Tylenol is my friend too. I am on a plant-based diet and also on a few medications that have kept it under control over the years.
@Ldybug97 It's really difficult to diagnose. It used to be only diagnosed with a positive ANA test. But it has changed over the years to include symptoms as well. You usually only have a positive or borderline ANA when the lupus is active. So it can be difficult to get a diagnosis. I think the only reason I had a quick diagnosis is because it was actively destroying my kidneys when I was diagnosed.
@Jeanmarie thank you, I could have use your expertise about eight years ago. I think that’s why it’s so important for our families to share medical history. A couple years after I was diagnosed I was having a conversation with my sister that I share a dad with. We were talking about kidney disease. She was talking about how my great nephew has sickle cell anemia. They were trying to figure out on which side of the family it comes. My dad had been tested and he was the carrier. My family never wants to talk about family medical history, but it could have helped my great nephew and a great deal. Especially since my sister has a kidney issue but a separate reason.