From Pain to Hope - raising awareness and offering support for people with CPRS

[00:00:00]The problem is that it's not visible. So obviously um like for instance you look at me and nobody would say that I'm in pain and it's very hard. I am I am and it's I mean 24/7 I've got pain 24/7 and it's hard for people to understand it which is something that we have uh noticed you know it's it's and we we understand that it's very hard um when you look at somebody who doesn't look ill uh understand how bad she's or he is you know and it's really really hard >> and although it's a rare condition I believe it's even rarer to be diagnosed as young as your you As far as I'm as far as I know, my daughter is one of the first children to be diagnosed with this condition in Jibralta. Um it started off in November 24. She just came home with a pain. We actually been at trampoline park and she started with this severe pain. Um as a parent you, you know, get a bit of neuropen, tuber grip, go off to school. There's nothing wrong with her, but the pain continued for several weeks. So I took her to see a few clinicians at the time. Um we had blood tests, we had MRIs, we had ultrasounds.

[00:01:09]thing is with CRPS, none of these tests will show you that you have CRPS. Um, basically to be diagnosed with CRPS is a criteria called the Buddhapest criteria, which is basically um a list of symptoms and my daughter ticked all those boxes.

[00:01:25]Finally, she was diagnosed about a month and a half after in January. Um, but reason being is because I kept, which I think is really important for parents to know that I kept a photo log and a diary of events. um because sometimes when I actually went to see a specialist at the time, she may not have had a flare up at that point. So it was hard to to show that person what she was going through.

[00:01:46]So basically I went to see a pediatrician. She was great in the gha.

[00:01:50]um she immediately um passed on all of the information I had given her to a rheatologist in London and the following day they called us and they said basically based on the information you have given us which is why I think it's so important for parents because you know your child best and I knew there was something severely wrong so she was diagnosed and over the phone and then a month later we actually got a diagnosis and my daughter was declining very fast from the commencement of her pain she was on crutches after a And by the time we actually see overseas therapy, uh she was in a wheelchair. So we found this therapy and the therapy was exceptional for my daughter's journey and after one session it's it's a surreal moment today, but she was walking.

[00:02:37]>> What does it entail exactly?

[00:02:38]>> It's um well basically it's very similar to a TENS machine. You know what they use in maternity? It's um it's looked at very like in undervalue in in UK because there's not enough clinical based trials to to point out that it's great enough but it's used in they've got it all over America in all the pediatric hospitals.

[00:02:57]They've got it in Germany in Italy where it started Australia. So we're a little bit behind in that point. Basically this scrambler therapy what it does is it's noninvasive. It's painless and what it does is electrodes. They put electrodes around the sight of pain and what it does is it scramles the signals of pain.

[00:03:16]So your body, the alarm in your body has gone off, whether it's been from an old injury and what you're doing is you're scrambling. So basically calming the nervous system to let them know that there really isn't any pain.

[00:03:27]>> And after 10 sessions, which is what usually this therapy consists of, Monday to Friday weekend break, then you commence again Monday to Friday. And after 10 sessions, um, we continued the care that we got from England, which were brilliant because she was still suffering. Her pain went down from a 10 to a two after therapy in in Italy. But, um, she was left with something called aloudia. So, allia is like it's basically like a type of hyper sensitivity to the foot and um, we had to work very hard alongside England to try and help her with the hyper sensitivity she had in her foot. So they were great. They were amazing. And I can gratefully say that my daughter's been in remission for 15 months now.

[00:04:11]>> I unfortunately uh years back this there is nothing to I mean I I did have tense machines and all that but unfortunately it's recently that all this has come up.

[00:04:23]So obviously I was on the I mean I'm far too gone for the scrambler. So obviously it's just a question of trying to get as best as possible in the sense of the um therapy as in physio and things like that. But uh I'm really really happy that at least now because I wouldn't like her daughter to go through what I have had to go through basically on my own. I mean I did go to UK and I did see a fantastic specialist and team and uh they are the ones who have given me the tools to um benefit myself and to be able to be a voice as well on the uh CRPS and obviously when we met um there are things that I do tell her look uh let's do this because obviously I wouldn't like anybody to suffer the way I have um I'm quite positive You have to be very positive with this. I was very fortunate to have a very uh supporting family. That is also the key and um it's just a question of of day by day. I only started this journey basically because Scrambler was amazing for my daughter.

[00:05:35]We learned a lot from UK the chronic pain team we have there. And I just wanted to share with a lot of parents who just so they're not they don't end up and find themselves in such a dark lonely place that we were as she was the first child to be diagnosed in Jibralta.

[00:05:48]It was a it was a we felt lost for months on end and the worst thing to see your child in that amount of pain and and nobody give you answers on what's going on. So I started off this journey just to just to share about her experience. What might work for her might not work for another. Scrum has extremely high success rates. It's not like a miracle thing, but it can give you quality of life and lessen your pain, which is even if it's halfed, it's an amazing achievement. So, what ended up what started out as a journey has ended it up in a support network group and I've managed to um I can gratefully say help a lot of people and I've sent quite a few children to Scrambler Therapy. I've sent a few people from Jibralta as well and I can say they're all painfree. So, it's it's a big thing.

[00:06:32]I'm trying to turn uh a negative situation into a positive one. And I just like to say like Nadine was saying, sorry my voice >> worst day to come today. Um I just like to say that early intervention is the key because early diagnosis you have a higher chance of remission. In CRPS it's it spreads not like for example like a cancer would spread but the nervous system is in an overactive state. So if your pain starts in the hand, eventually goes to the wrist, it goes to the elbow and so forth. So like Nadine said, she has been left for so many years in the system like this that her body has learned to just be in that state of alarm constantly. And it's good to see that with my child getting there soon and knowing the symptoms soon, now she has a quality of life. So it's it's a big thing.