Family History of Lupus

[Johnnyb10]

You may recall my first post, don't give up saying I got diagnosed with lupus in 2011 and last year it affected the heart valve and I had an op, but came back and am now running 3 times a week.

I want to share my first contact with lupus, in 1978 I was 16 and my brother 19. He was ill and no one could work out what was wrong, so he got referred to the top London hospital St Mary's in Paddington. He was admitted and his condition worsened quickly, he had kidney failure, lost loads of weight and developed a blood clot on the lung. After a few months his body could take no more and he died aged 19. We learnt at this time he had got lupus, at the time very rare (especially in males) and no real treatment. The doctors asked if parts of his body could be used for tests and research. My mum agreed to this, so in some way this might well have helped with future treatments.

We have come a long way and treatments are now good and it is possible to still lead an active life, it is amazing to think lupus has played some part in my life for nearly 40 years. The fight goes on to beat it and to make people aware of this illness.

[SjogiBear]

Thank you so much for sharing your story and memory of what your brother went through. I don't think the general public realise just how serious a disease lupus actually is. Thank goodness treatments have come a long way since the 1970s. I became ill when I was 16 back in 1982 - my kidneys and liver eventually gave up and I was transferred to a renal ICU in the local RAF hospital and although I never knew it at the time, my parents were told that I was unlikely to make it. However, I was one of the lucky ones and did pull through and have lived a pretty normal life just with various health hiccups along the way. It is still an illness without a cure so the work of medical researchers as well as that of Lupus UK is so vital.

(BTW it's thanks to the fantastic work of St Mary's Recurrent Miscarriage Clinic that my little girl is here today!)

[Johnnyb10 in reply to SjogiBear]

Thanks for your reply and hope all goes well for you and your family, take care John

[Prima2008]

Hie

Thank you for sharing your story

It's amazing how you have coped all these years

If I may ask do experience any plain after running 3x a week ?

How have you managed?

Iam trying to get into walking and possibly run more than once a week but every time I do it my body just won't let me due to joint pain fatigue brain fog that lasts for a week rendering me useless to even vacuum the house .

I have Mtcd and taking hydroxychloroquine and naproxen for pain

It depresses me to think that in my 30s I am now not able to do much activity though I want to

Any ideas would help

Thank you

[Johnnyb10]

Hi thanks for your reply, no I don't experience pain after running, I have someone who has ran regularly for over 20 years. Not sure what MTCD is but I guess you can only do as much exercise as you feel comfortable with. Even a very short walk and try to build up. You could also try some exercises in doors, daily stretching might help the joints. Maybe whilst sitting down could just move ankles and legs so as don't stiffen up. It might also be worth considering yoga or pilates but speak to a teacher of this to explain your position and how it might benefit you John

[Sheole]

Thanks for sharing.