Why is nobody talking about juvenile arthritis?

[Patient0]

I just heard that my friend's nice has been diagnosed at the age of 11 and it scares me that she will be put on hard drugs without any consideration of the alternatives first. How can we live in the information age and still choose to just succumb to medicine without a thought for other options?

[andyswarbs]

You might be interested in Katy;s story withoutwings.co.uk/living-p..., briefly she has had arthritis from 10 months old and until 2 years ago on crutches, in hospital, countless operations, just about every drug imaginable. Now at the age of 27, following changing to a whole food plant based lifestyle supported by daily yoga she is down to the last of her drugs, in no pain, no inflammation and applying for the US yoga championships.

What kind of life do you want for a child? Why did Katy have to live in agony for 25 years? Why didn't the doctors say diet "wouldn't help", instead pushing drugs that provided little relief and certainly no positive long term outcome?

[helixhelix]

This is your friend's niece, and at 11 years old she is in the care of her parents. Her parents are probably hugely upset that she has this condition, and completely involved in her care. If I were them I would find it rather invasive to have a friend of her aunt/uncle offering advice at this stage - however well meant. Getting a diagnosis is overwhelming, and they need time and space to come to terms with it. If they are sensible people they will probably look at options anyway, especially if drugs are proposed.

If you look at posts on these forums you will find that there are often posts from people pulling their hair out at getting unwanted advice from well meaning friends. So think hard before you make any suggestions. What they may need more right now is sympathy.

[Kai--]

Patient0, kindly consider:

🤔💭 Juvenile Idiopathic Arthritis (JIA): Jenn, Cole, & Joseph Share Hope & Practical Experience: healthunlocked.com/nras/pos...

🤔💭 JIA-er Katy Shares Her Progress: From 10 Months Old to 26 Years Old: healthunlocked.com/jia/post...

Best wishes to you, your friend, & her niece, Patient0. 😌 🙏 🍀 🌺 🌞

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[Hidden]

I was diagnosed with juvenile idiopathic arthritis at aged 10. I’m now 35 so I’m sure you can appreciate that medical treatment has come a long way since the mid-1990s. I was given the best disease modifying medication at the time (sulphasalazine) in combination with anti inflammatory painkillers. In the early years my mum tried me on various homeopathic remedies and diet plans.

I have arthritis in both my feet, both ankles, both knees, my left hip, right shoulder, jaw, fingers, thumbs and both wrists. Prior to being on the stronger biological treatments I developed permanent deformation of my joints, something as a child and teenager, I was singled out for and just made me more unhappy than I already was for being different. To this day I hide my hands when possible because, (although I’m used to it), they inevitably become a topic of conversation and focus that I don’t want!

As an adult, presumably in good health (apologies if incorrect), the concept of a young child being given such strong meds is bound to be scary. However I think you’ll be surprised at how much she will take it all in her stride. I speak to people around my age, diagnosed as adults, and definitely get the sense that they are struggling with it more than I ever did.

The best chance she’s got of a ‘normal life’ is to take the medication she is prescribed by her consultant. If it is controlled from an early age then she won’t suffer worsening effects that could have otherwise been prevented. Furthermore she’ll grow up with the attitude that taking the meds is ‘just one of those things’ she has to do to stay well.

Kids don’t have the foresight capability to truly understand how their condition will effect them in the future so by the time she does receiving preventive treatments will be so normal to her it’ll be water off a ducks back.

By the time she’s my age who knows where the technology will be at! Hopefully there might be a cure!

Regarding the alternative treatments, it’s important to have a balanced diet etc (as it is for anyone) if she has excess weight on her then her joints will suffer more. However none of the homeopathic type of treatments are backed by scientific testing to show positive results. They never worked for me either. I really wouldn’t recommend just relying on them to try and treat her JIA.

Hope this helps somewhat / provides you with a new perspective 😊.