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General

World Lupus Day May 10th

Ldybug97Transplant Patient
May 4, 2024 in General

Let wear purple on Friday May 10th Many transplant patients havre been diagnosed with Lupus

1 - 4 of 4 Replies

  • TServoldTransplant Patient

    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.

    May 7, 2024
  • Ldybug97Transplant Patient

    @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.

    May 7, 2024
  • JeanmarieTransplant Patient

    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.

    May 8, 2024
  • DebTransplant Patient

    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.

    May 8, 2024
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