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My Family and Me

RA has marched through my family - stomping its hobnail boots on my dad, his mum (nanna), my sister, and me.

I remember nanna wearing her splints and letting me try them on when I was three.

Who would have thought I would end up with the same disease 13 years later?

Rheumatoid arthritis runs in my family

Nanna died when I was about 10 of the lymphoma that tags along with RA.

My father was diagnosed not long after his mum died. A Harley Street specialist told him he’d be in a wheelchair in six months.

That was nearly 50-years-ago and no wheelchair. My dad is a determined man.

Receiving my RA diagnosis

I was diagnosed at the age of 20 after four years of "we don’t know" from doctors. Seronegative RA.

Trust me to be difficult! Luckily it was a slow progression but it still caused all sorts of issues - with depression and fatigue my constant companions.

I’ve had the same rheumy for 38 years and he keeps up with all of the research. We have open conversations about all sorts of things.

I’ve had compartment syndrome in my legs, swollen joints in weird places, and issues with my eyes. I’ve now developed psoriasis in my ears and on my scalp. Yay!

How my sister treats RA symptoms

My sister became ill when she was in her mid-30’s. You guessed it - RA stomped on her as well!

Like dad she has an aggressive form of RA.

She had to give up work for seven years. For all of those out there saying try this diet or that supplement, they didn’t work. She tried for those seven years.

My sister is vegan and very much into a healthy lifestyle. It didn’t stop RA from marching in and taking over.

When she started on Humira there was a massive improvement in her RA. She’s been on Humira for years and that has slowed down those hobnail boots.

The effects of longterm RA

My dad? He’s had an aortic valve replacement, knee replacement, typical RA involvement of hands and feet, shrunk 3 inches (he used to stand tall at 6’3”), and has thyroid issues.

It’s probably been behind most of his depression as well.

He has been on infusions for a few years which has slowed progression but not stopped it.

He now has interstitial lung disease with pulmonary fibrosis. Quite an insidious complication of RA.

My dad - my hero - is currently in ICU trying to die.

He is in stage two respiratory failure as he can’t blow off CO2. This is a common sign of ILD with pulmonary fibrosis.

He is being kept alive by the medical establishment at my mother’s behest (she doesn’t have RA). They can find nothing else wrong - no infection, no heart failure, no kidney or liver failure, no stroke.

I know he’s tired of the pain and suffering after fighting this disease for decades and wants to be at peace. It is currently being denied as his rheumy has not been consulted.

Get early treatment for better RA outcomes

The moral of this story? Many years ago when dad was diagnosed, treatments were limited.

Today many more treatments are available so this doesn’t have to happen. If you are unwell and believe it may be an autoimmune disease, push for a diagnosis. The sooner treatment starts, the better the outcome.

Diagnosed - or know someone diagnosed - with RA/RD? Be an advocate.

Educate yourself about RA/RD - reputable sources, please! Keep up with legitimate clinical trials. Make sure your/their rheumy listens and actually hears what is said. Be a partner in treatment.

Those hobnail boots have certainly wreaked havoc in our family. Here’s hoping they will come to a halt with me and not affect my adult children,

Be well - look after you and yours.

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