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Alice’s Story (Lupus)

Alice's Story Lupus NephritisHi everyone,
I’m Alice, and I am 16 years old. I was diagnosed at 13, halfway through my first year at high school. I had gone to the beach for a week prior to diagnosis and thought that my fatigue was due to the swimming and late nights with my family. Suddenly, my eyes started swelling. and I assumed it was just a minor side effect from lack of sleep. I was sadly mistaken when I was taken to hospital when my ankles became bigger than my calves! I had no joint pain or rash, but they diagnosed me within a few days, which I’ve heard is quite rare (correct me if I’m wrong :)).

I was sent to a hospital hours away from where I lived and had to fly in a tiny plane with just a doctor and my mum and a pilot. I vomited the whole flight there and was admitted for 2 weeks. I had a kidney biopsy and began to start taking my 27 pills a day. 🙁 After a lot of chemotherapy, albumin infusions, hospitalisation and more, I recovered. I gained 15 kilos as a result of my meds, and as I was previously 35 kilos. It was a huge change! Going back to school was worse than hospital though! I was teased about the weight gain, the stretch marks that covered every inch of skin from toes to shoulders, and my hair loss. I have osteoporosis as a result and have not done sport in 3 years, and going from playing soccer, rugby, waterpolo, netball and basketball to only doing yoga and gym was a big change! I lost a lot of “friends” through the process as I realised how little they cared for me, and that was really hard!

I’m finally better but still go to hospital a lot and still have bone problems. I have lost most of the weight, but as I’m growing I will always have a few kilos there which I would have gained anyway due to puberty.

Good luck to everyone out there dealing with this horrible illness!! And I wish everyone the best!! xx

Alice
Australia
Submitted 12/21/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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