Kylie and daughter Lucia’s Story
I’m Kylie and we have three daughters, my youngest Lucia is aged 7 months.
Here is a bit about Lucia’s condition.
Lucia was about 4 months old when she was diagnosed with Urticaria Pigmentosa, she had the spots on her body for about 2 months beforehand but the GP had no idea what they were and finally referred her to a dermatologist, who knew instantly what was wrong. That was 4 months ago. I was so glad when the dermatologist finally gave me a diagnosis as the 3 GPs I saw previously didn’t know what they were, I could finally put a name to it. I didn’t really get much information about UP at that time, the dermatologist gave me some websites to look up for information, which I did straight away.
Lucia isn’t too bothered by her condition, she gets itchy at times (which I now recognise as she arches her back and wriggles about a lot and has a little moan), I was given Piriton [chlorphenamine] syrup to give her when that happened but every time I give her that she is violently sick, the doctor doesn’t know why. Lucia hasn’t needed it recently so I don’t know if things are still the same or not. Certain things like bath water temperature and hot weather (which I don’t have to worry about much here!!!) seem to affect her. Thankfully I haven’t come across anything else yet that does trigger a reaction. But I feel I’m always on my guard. We have just come back from swimming today, I was worried how she would be in the water but she was fine. Lucia had a few folk staring at her back (which is the covered in spots) but I’m getting used to that. We have our next appointment with the dermatologist soon and Lucia will be getting blood tests done then and also photographs taken then so we can keep a check on the amount of spots she has. I’m so glad I was put in touch with this group as I started to feel no one else knew anything about UP as everyone I mention it to looks at me blankly so it’s good to be in touch with people in a similar situation.
[urticaria pigmentosa, UP, skin spots, reaction to temperature change, child]