Hi from a parent

Fatpanda

Hi there,

ive joined here today as my daughter has severe osteoarthritis in her right hip following having Perthes Syndrome as a young child. Her hip ball has grown back in a cylinder shape and she is in a lot of pain. Her young adult hip consultant has recommended total replacement, but we found out today that the waiting list is FOUR years long.

She takes tramadol for the pain and uses lidocaine patches. Unfortunately she is on her feet a lot as she has chosen to train as a beauty therapist and has a pt job in a spa doing massages and facials.

Shes just turned 18 and my heart hurts knowing she could be in this amount of pain for so long. She’s very uncomplaining but I can see it in her face. After spending 4 years in a wheelchair as a child at primary school this all feels very unfair.

Not sure if anyone else has these issues but it feels good to write it all down!

Susan

x

Anna

Hello @Fatpanda and welcome to the online community.

Your daughter has osteoarthritis in her right hip following Perthes syndrome as a child and is in a great deal of pain. She has been recommended a total hip replacement, but you’ve been told the waiting list for this surgery is four years. It breaks your heart to see her in pain.

As a parent, one of the hardest thing is to see your child in pain and feel unable to help. It sounds like you are a wonderful supportive Mum, and your daughter sounds like a determined young woman who won’t let her condition get in the way of what she wants to do in life. Many of our members will understand what you’re going through and I’m sure will want to support you.

You and your daughter might like to have a look at the young people’s forum ( link below). It’s a space for young people to share their stories and support each other.

https://community.versusarthritis.org/categories/young-peoples-forum

Please do keep posting - questions, concerns, or just letting out your feelings - everyone is very friendly and supportive here and I know you will be made welcome.

Anna ( Mod)

Anna

Hi @Fatpanda,

I just found this inspiring story that you might like to read - it sounds a bit like your daughter’s story too, especially her determination:

https://www.versusarthritis.org/about-arthritis/your-experiences/your-stories/natalies-story/

Anna ( Mod)

stickywicket

If writing it down has helped I'm very pleased and please continue. As a mother and grandmother, who has had RA and OA for most of my life, I know I'd rather go through anything myself than see my sons and grandsons going through it. And yet....and yet.... the hard times are where we learn resilience and your daughter sounds to have that in spades.

Orthopaedic waiting times are horrific right now and I'm guessing that, as a young person, your daughter will not shoot to the top of any list as she'll need tricky revision surgery later. But..... I'm wondering if there's any way you, and maybe family and friends, could get together to pay for private surgery. My husband recently broke the beliefs of a lifetime and went down that route for his new hip. I guess there could be a possibility of starting a GoFundMe page either. I can't say I know anything much about it.

We have a lovely lady on here, @frogmorton , whose 17yr old daughter had to have a new hip and shoulder following extensive chemo for leukaemia. I know Lucy wanted to be a hairdresser before it all kicked off. I'm not sure what she's doing now but, if you PMd @frogmorton , I'm sure she'd be glad to help if she can. Good luck to both of you. And do come back here if it helps at all.