LUPUS UK
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Been a good few weeks !!

So I just wanted to share how much of a good few weeks I've had and will be having . I thought when i got told I had lupus that was the end of life for me . I had a lot of depression in the first year of diagnosis . Now I've realised that life with lupus can carry on but in moderation .

I passed my driving test!

I got a car!

My apprenticeship is advertising a job internally !

I'm 18 on Monday !

Thursday I'm flying out to lanzarote for 2 weeks !

I know I have to take extra care and precautions because of my lupus . It isn't stopping me from living my life anymore !!

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Love it Lou - onwards and upwards!!!!!

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LouLamb,

Great to hear from you, glad things are going ok.

Happy 18th for Monday, you sound like you have a very good on your shoulders for you age.

Enjoy Lanzarote, I know I joked in your driving posts about flying being the next thing to do. I take it you’re not flying the plane.

Enjoy your 18th and your holiday✈️😎

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Thank you .

Nope not flying the plane 😂. Will be my first time on a plane though

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We can all see you smiling with the path that you are building through life. May your excellent progress encourage others. Well done, continue with the updates to bring smiles to us all. Best wishes Kevin

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Thank you

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Hi LouLamb .

I dont have lupus myself, but look on this site regularly as I have a friend who has it and I wanted to get an understanding of the illness. I actually have RA, another autoimmune disease (as well as other conditions) I dont know how lupus directly affects you but from seeing my friend suffering I have a good idea of what you are going thru.

I first saw posts from you on here last year and started to regularly read them and I have to say you have been a true inspiration.You have taken life by the horns and just got on with it.You have put 110 % effort into all you have done and had such a positive attitude to life and everything it throws at you,and stuck at it.

Well done on the job the car and the driving test.

All thats left now is to wish you such a happy 18th birthday for Monday,and a well deserved break in the sunshine.Have a great time its been well earned.

And your still only 18- just think of what else you can achieve already having done all that.

Be proud of yourself Lou theres a lot of life waiting out there for you.

Take care.

Crusee

XX

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Thank you so much xx

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Hey Lou,

That is so great to hear. Have a fabulous holiday x

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Thanks xx

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Hi loulamb

Lovely , positive post that will inspire so many on here. I hope you have a fab 18 th on Monday and have a great celebration!. Good luck for your first flight, and enjoy your well earned holiday. Keep safe and posting more great achievements as there's no stopping you now. X

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Thank you . I thought I'd share because when I'm at my lowest and I read on here how great people are doing it really helps me x

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It's so helpful Loulamb, to have the good news on here!. I agree I find it so inspiring and helpful when things are rough!. I bet your loving driving and being independent!. Enjoy your day tomorrow. X

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Thank you . I do love driving . I'm not a confident person normally . Driving I'm so confident my mum and Aunty can't believe it . It doesn't bother me driving on my own or on dual carriageways

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Happy birthday Loulamb, hope you have a great day. It's wonderful you like driving. I do too. Maybe as its given you new found confidence, you'll be more confident with other things?. Next stop flying, have a lovely holiday. X

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Thank you x

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That's so great to hear! Thankyou for sharing such positivity! I am so new to all this and often you read about problems rather than good things in forums - but I understand that that is why the forums are there.

My son Fin was diagnosed almost two weeks ago, the same week he turned 18. He has been classed as 'severe' with class 4 kidney disease. I felt like he was dying, watching him deteriorate in hospital. He has had intensive steroid treatment and now is on mycophenolate. Starts rituximab on Tues.

And in spite of this he remains so positive. He is off to watch motorsport at Knockhill today with his brother and dad as a treat. A couple of weeks ago I wouldn't have thought that possible.

Little steps and a positive outlook!

All the best to you. Have an amazing holiday (with your factor 50!!), enjoy the plane ride and stay safe driving your car!

Life is good 😊

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Thank you .

I hope your son gets his treatment sorted so he can have a lot of positivity ! Xx

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That's great LouLamb...all your perseverance is being rewarded!

But don't forget the after sun lotion when you get home.After being in the sun skin can get very dry!

Have a wonderful holiday,you're a credit to your generation!

AC

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Thank you x

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I'm thrilled for you Lou, and want to thank you so much for sharing this. You've given me a big smile! x

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Thank you x

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Happy 18th (for Monday ) LouLamb, have a great holiday

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Thank you x

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I can feel your energy and excitement!!! YEA!!!

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Ah thank you. X

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Hi Loulamb, I have been following your journey since your first posts. You have accomplished so much, you should be very proud!

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Thank you so much xx

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Hi LouLamb, how lovely to read your post. Looks like things are going great for you. Hope you have a lovely 18th birthday and a fabulous holiday. Take care x

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Thank you x

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Hi Lou.. hope you have a brill time, I've just come back from a week in the sun.. factor 50 and baseball cap went everywhere with me.. walked miles everyday best I've felt for months .. I hope it does you good, may you have lots of laughter too.. I love your positivity don't ever loose it! 😉

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Thank you . I've got myself a hat and sunglasses . I've also got to bottle of factor 50

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Happy birthday .. 🎂🍹🍾x

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Thank you x

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It's so great to hear about all of these super positive things happening in your life! Enjoy your holiday, celebrate your achievements and have a wonderful 18th birthday! 🎂🍾🎁🛫🚗

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Thank you x

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So very happy for you!

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Thank you x

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Happy birthday you beautiful 18. Thank you for sharing your positive vibes and enthusiasm. Life is exciting may you enjoy it for a long time. Makes such a nice change to read about your fantastic news rather than our gloomy sad lupus stories. Hope the weight losing programme is on the right course too. Enjoy, life is too short and go easy on the sangria and the sun exposure, asta la vista baby!

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Thank you . I've stopped the weight loss for the holiday . I'll be straight back on it start of November !!

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Happy 18th Birthday! 🎉🎈🎉

Have a great holiday!

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Thank you

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Hello Lou! So GOOD to read your post!!! I am over the moon for you. I totally understand that feeling when you are diagnosed. But like you said, we are all different and once the meds are working, you can lead a relatively normal life. Long may it continue for you. You deserve some respite from it at your age. Great news about your job too. xx

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Thank you !! Xx

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LouLamb. Hope that you had a great holiday. I’ve just written my “view from the chair” for News and Views and you provided the inspiration. Thank you.

During October 2017 we held our East Midlands Information day in Nottingham. The sellout audience (no charge!) enjoyed an interesting and stimulating afternoon. Our thanks to Gill Woodford and the team for a wonderful day. If you missed the event I recommend all the presentations that can be found at the Lupus UK website.

In this age of social media, it is pleasing to see that our members still enjoy meeting face to face in our regional and local groups. A new group has formed in Pembroke and there are several conversations on HealthUnlocked about starting up new groups, for example, West Yorkshire. If you would like to join with others please contact the Romford team for practical support to set up a group.

In July I joined Chris Maker in Liverpool to attend the British Association of Dermatology meeting to help raise awareness amongst their members.

During September it was a privilege to attend the Paediatric Rheumatology Symposium in Athens. The first morning was chaired by Prof Michael Beresford from Alder Hey. It was very encouraging to see the progress being made in the early diagnosis and treatment of Lupus in young people.

I spoke at the European Network for Children with Arthritis on the work of Lupus UK. There was a common theme in finding mechanisms to overcome fatigue and leading fruitful lives.

On the 12th May 2018 our AGM and Information day will be held in sunny (no bias here!) Llandud- no. It's my favourite resort!!

In the last edition I mentioned “If you need to talk there is HealthUnlocked and our excellent con- tacts listed in this edition. I enjoy visiting HealthUnlocked on a daily basis. Members support each other, they are learning to drive, they are finding that dogs, Pilates, Yoga etc. all help to overcome fatigue. We are there for each other....teams pull, otherwise we are pushing. Let's pull together and help support each other.”

Recently an inspirational young lady put the following post on HealthUnlocked:

“So I just wanted to share how much of a good few weeks I've had and

will be having . I thought when i got told I had lupus that was the end of

life for me . I had a lot of depression in the first year of diagnosis . Now

I've realised that life with lupus can carry on but in moderation .

I passed my driving test!

I got a car!

My apprenticeship is advertising a job internally !

I'm 18 on Monday !

Thursday I'm flying out to Lanzarote for 2 weeks !

I know I have to take extra care and precautions because of my lupus .

It isn't stopping me from living my life anymore !!”

Have a great Winter and a peaceful Christmas. Best wishes Kevin

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Oh wow . Thank you !

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