mycophenolate- skin

It's very sad to say because I feel I am being superficial. However, my sister being the most humble and kindest person I know has had lupus for about 6 years. We both have light skin, we are twins and now her whole body is black. The strange thing is that the doctors don't say anything and don't care. I don't have anything against dark skin, but she wasn't born that way. I guess if she were white and then turned black doctors would be more helpful.

5 Replies

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  • How do the doctors respond when you/she asks them about it? Have they said it is a drug effect - skin darkening is also seen in some disease processes? I guess if it is a drug side effect, they are judging the positive effects of the medication outweigh this. If it is causing your sister distress, do encourage her to speak to the doctors about it a bit more x

  • As whisperit has mentioned, maybe your sister needs to find out if it is effects of meds or to do with illness. If it's effects of meds I think if it were my sister I'd just be so thankful that she's still here for you to enjoy her company. None of us leaves this world the same as we arrived :)

  • Thanks for the replies! I know she has asked about it. Not sure the response. As one of you have said, I think she is just happy to be alive because last year she was so bad she almost died. It could be a mixture of things. The meds, kidney problems, or even just a reaction. I will ask her to mention it to the doctors again. Right, we don't leave this world the same. 🙏🏽 Whatever the reason, I admire her and those who have suffered and are suffering!

  • Illness amongst twins can be hard and you sound like a very caring twin which your sister needs and raising concerns can be helpful and your understanding of her illness can help you help her. I am part of a number of twins in my family and my twin is the most supportive of all my family and it's help to have her talk to me and ask questions so I have a better understanding of lupus. Wishing you both well. 👯 ML

  • Yes, being a sibling in general can be hard. Having support is a must. Hope you get well! Thanks

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