Hello my name is Vanessa and I am 23 years old li... - LUPUS UK


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Hello my name is Vanessa and I am 23 years old living in the UK

Nessa173 profile image
34 Replies

Please take a moment to read my profile. I would love to hear about other peoples stories as I have been newly diagnosed with Lupus and I’m really looking to learn more about it

34 Replies
Oshgosh profile image

Welcome to the forum.its. Very supportive.Please can I suggest that you don’t use your pwn name as a user name.it can attract unwanted attention.

It’s better if you use a nickname.

Take care

Nessa173 profile image
Nessa173 in reply to Oshgosh

Thank you for that 😌

Oshgosh profile image
Oshgosh in reply to Nessa173

I’m so glad you’ve changed it.its-put my mind at rest.x

baba profile image

Lots of accurate downloadable information on Lupus uk main website.


Nessa173 profile image
Nessa173 in reply to baba

Thank you! 😊

Josiah150767 profile image

HiWelcome to the group

Nessa173 profile image
Nessa173 in reply to Josiah150767

Hello and thank you ☺️

svfarmer profile image

Hi 🙋‍♀️ and welcome to the group - sounds like you’ve had a very scary time of it all but glad you have a diagnosis- I’ve had Lupus for 4 years and am still learning xx

Nessa173 profile image
Nessa173 in reply to svfarmer

Hi thank you! I am so pleased to finally have a diagnosis yes! Wow we still have so much learning to do. I hope you’re well xx

ez2nvmorgan profile image

Hello and welcome to the group

Nessa173 profile image
Nessa173 in reply to ez2nvmorgan

Hello and thank you! x

JCZW profile image

Hello Nessa welcome to the forum. I'm new to lupus as well and the forum has been a lifeline for me. It really helps to talk to people who understand. I felt so lonely but these wonderful people have helped me. I also have an occupational therapist who has been so helpful giving me strategies to help with the many symptoms. X

Nessa173 profile image
Nessa173 in reply to JCZW

Hello thank you for your message. I hope you're doing ok.

I already feel so welcomed it is really lovely speaking to others about it. I felt really scared but my parents told me about this site and its been the great. x

JCZW profile image
JCZW in reply to Nessa173

Hi Nessa I totally agree with NanaFifi get as much information as you can. I've bought lots of books on lupus to help me understand some of the best ones are from lupus u.k. they are written in language that you can understand. Stay strong big hugs to you 🤗🤗🤗

Nessa173 profile image
Nessa173 in reply to JCZW

Ah what a good idea! I'll have a look out for some books and have a lot more research do! Thank you again sending my love stay safe! xx

Kevin53 profile image

If you would like to speak to someone Lupus UK can provide details of their trained contacts. Best wishes Kevin. Chair Lupus UK

Nessa173 profile image
Nessa173 in reply to Kevin53

Thank you ☺️

CecilyParsley profile image

Hi Nessa and welcome. You will find, support, information and humour here. Xx

Nessa173 profile image

Hi, i am waiting for a letter in the post stating what lupus it is as im actually unsure my self ive been so overwhelmed with all the information my doctor has given me. Right now i am on on mycophenolate, hydroxychloroquine and prednisolone. All is well at the moment, im still working from home and feeling okay in my self.

I hope you're well

Nessa173 profile image

Thank you. Already feel so supported.

I hope you're well xx

NanaFifi profile image

Hi Nessa, and welcome to the group. I was diagnosed with Lupus (SLE) when I was your age so I can understand how you’re feeling right now. It’s all a it overwhelming and to be honest quite scary so a big, gentle hug to you xx

My advice is to get as much information as you can about your condition, knowledge is power and will help you make the right decisions for you further down the line. It can take quite a while to get the right combination of drugs to help you but hang on in there because once they get the “recipe” right you’ll really see a difference.

I’ve lived with Lupus and Rheumatoid Disease for over 40 years now and I find that if you look for the light at the end of the tunnel you will usually find it! Good luck xx

Nessa173 profile image
Nessa173 in reply to NanaFifi


Wow thank you for your lovely message.

It gives me so much hope knowing others like you are dealing with it. I know some days will be hard but we are all in this together.

Definitely! I have so much to learn about it and yet to see if/what triggers it.

Thank you again, keep safe xx

NanaFifi profile image
NanaFifi in reply to Nessa173

You too xx

Kim_21 profile image
Kim_21 in reply to NanaFifi

Hi, I’m from Australia, initially diagnosed with scleroderma and developed to lupus SLE, it’s has been almost 7yrs...feeling so frustrated when seeing my hair get thinner and skin damaged, lock myself at home more than a year now. As you been living with lupus such along time, have u ever came across these issues and how can I help myself as I’m sad about my look now? Plz advise, thxxx

NanaFifi profile image
NanaFifi in reply to Kim_21

Hi Kim_21 I’ll message you x

BeeManShrop profile image

Hi Nessa Welcome to the group. You will find some really useful information here. I am in the same position in trying to learn more about Lupus. My wife was finally diagnosed just before Christmas and is still quite ill and fatigued. In fact she is having her afternoon sleep just now.She is being treated with hydroxychloroquine presently and we are still in the waiting period to see whether the dose is sufficient to do the job. Thankfully, she is slowly getting better the rash is gone and hair is coming back but some way to go re pain, so there is definitely a light at the end of the tunnel. I have read 3 books so far, most are written by medics so there is some techy language. I am currently reading a book called How to stay Sane in Pain by Karen Drennan - McEwan who suffers from Lupus herself. It is written in plain English and there is a lot of easy to understand information and tips. Like any sources of information you will have to filter it, make your own mind up, regarding what you need. Good luck on your journey. Hoping this helps and keep yourself safe -- chin -up.

Nessa173 profile image

Hello and thank you for your kind message. Send my love to your wife I do hope she starts feeling better in her self soon we are in this together, shes lucky to have a husband like you supporting and learning with her.

I will have a look into that book and by the title it sounds up my street right now as I’m trying to stay sane following my recent diagnosis 😅 but all jokes a side thank you again and all the best!

rosebud52 profile image

A very warm welcome, I was diagnosed with Lupus in 2019 and I'm still learning but this is a good place to be as everyone understands 🙋‍♀️ x

Nessa173 profile image

Hello and thank you! I’ve found out so much already! I hope you’re well x

Hi Nessa! Just like you I am also from an Asian background and I was almost the same age when I got diagnosed with Lupus - Systemic Lupus Erythematosus to be exact! There are different kinds of Lupus and there are also some overlaps with other condition but your symptoms are almost exactly the same as mine! I was clueless what was happening to me I thought it was just an allergic reaction from something when I was having urticaria (rashes all over my body). I also had swollen legs and feeling really fatigue which I thought I got from trekking as we just got back from holiday but turned out to be a lupus indicator already.

It must be a difficult time for you and it is quite a lot to process so take your time and don’t be hard on yourself. Its actually a good thing that you and I got diagnosed at a young age rather than having symptoms and yet still clueless on what’s happening to our body. Things will get better and symptoms will be manageable once you get the right treatment for you!

Feel free to message me anytime :)

Best wishes.☺️ X

Nessa173 profile image
Nessa173 in reply to Iamnotmydiagnosis

Hey, thank you for your message. Yeah I thought it was just an allergy but then my legs started to swell which was what really brought it to my attention!

How are you feeling at the moment? Have you had your vaccine for covid? I have mine this Saturday.

It has been hard to process but i try my hardest to be as positive as i can and this site has really helped my mental health :)

All the best x

rosebud52 profile image

Hi Nessa, hope your feeling as well as possible, I had lupus in my kidney and had to have a biopsy and also suffered badly with the lupus rash, I'm quite stable at the moment but little rashes keep appearing on my face but don't seem to last too long thankfully, but I'm always keeping a close eye on other parts of my body as I don't want to go through anything like that again, take care X

Nessa173 profile image
Nessa173 in reply to rosebud52

Hi Rose, thank you for your reply. So same as me really then! I'm so glad you are stable at the moment and keeping well i hope it stays that way. Are you still on medications to keep it stable or? Do people with lupus stay on medication for the rest of their life?

Best wishes x

rosebud52 profile image
rosebud52 in reply to Nessa173

It all depends Nessa, I know I will be like other lupus sufferers but others don't need to take so many, I take mycophenolate mofetil, hydroxchlooquine, prednisolone and others, happy to take them as long as they help and more importantly agree with me, I hope you get the right medication for you and I wish you well on your lupus journey, take care xx

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