We want to hear from our LUPUS UK members! - LUPUS UK

LUPUS UK
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We want to hear from our LUPUS UK members!

Chanpreet_Walia
Chanpreet_WaliaAdministrator

LUPUS UK would like to know why YOU joined as a member of LUPUS UK and how the charity has helped you!

Did someone you know recommend joining LUPUS UK?

Did the charity provide you with support and information during your diagnosis?

Do you enjoy reading our News&Views magazines?

Please comment down below or email me at chanpreet@lupusuk.org.uk

37 Replies
oldestnewest

When our 15 year old daughter was diagnosed with SLE in 2002. We would have been lost without the support of LUK. The rest is history I’m still involved with my favourite charity. Best wishes Kevin

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to Kevin53

Thank you for your response, Kevin. Your support is invaluable and much appreciated!

I was diagnosed in June 2017 and pointed in your direction for info by my rheumatologist and specialist lupus nurse

Excellent website with loads of health and info which has helped explaining things to friends and family easier

and this forum helps me feel a bit more like one of the gang rather than one on my own loads of friendly knowledgable and well humoured folk to talk to

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to HelenL75

Thank you for sharing this with us, HelenL75. I'm glad to hear that you find our website helpful and informative. It's lovely to hear that you enjoy using the forum and yes, we have many friendly and knowledgeable community members on here!

When I was diagnosed with Lupus in 2009, I was very sick, very scared and not at all reassured by my Rheumatologist telling me to read the ARC leaflet he pushed into my hands and that I would be on medication that coukd destroy my sight. I and my husband felt lost and adrift. My GP was young and tried her best but just knew little about it. I developed other frightening symptoms to which the Rheumatologist shrugged and said it is not Lupus related. He referred me to a Haematologist who told me about the condition I had and that in his opinion I should look for support groups. Unused to social media at that time I found an American Lupus group and joined. There was another Brit in the group who told me about Lupus UK. I cannot tell you what a lightbulb moment that was . I found I could buy books, speak to people for support, found UK Lupus groups on Facebook. I asked my Rheumatologist if he had tested me for APS and Raynauds? His response was that I had read about it on Google so I thought I had it. It transpired that I did have both. I seem to have ceased to become a member for the past two years even though my direct debit is still showing as active. It is one of those things that I have been meaning to sort out but not got around to it. I think that is mainly because my diagnosis has been questioned and I felt a fraud.

catno1
catno1 in reply to CecilyParsley

CecilyParsley,

Don't feel a fraud. I've lost count of the times I've had to explain SLE & APS to doctors who think they know what we suffer from. They think they know Lupus but only appear to know what it says on the NHS site. It would be hard to find anyone with SLE with that list as we are all so different. My Anticoag nurses have often said self diagnosis is often the best when I've had to visit the hospital for my once a year coaguchek machine test. Not the disease itself but the symptoms. I had three months of haemotological testing which proved 100% diagnosis in 2005.

Start by thinking that their questioning of your diagnosis is simply the fact they have no interest or knowledge of your condition. And stop feeling a fraud. No disrespect I swear to our fellow patients with rashes and renal problems but because I have never suffered these awful symptoms even a diagnosis of vertebral fractures was confused recently. Doctors were too busy looking at my renal blood results as to why I had acute pain in my spine! I have suffered major organ failure and many acute medical problems in the last fourteen years but even now feel like I have little support except for sites like this. Thank goodness we have them.

Keep well,x

CecilyParsley
CecilyParsley in reply to catno1

Oh that is so awful. I am so sorry. I hope that now you have that diagnosis that you are being treated and feel better than you were? I suppose I feel a fraud because my last Rheumatologist told me I had Fibromyalgia and hysteria and that the Consultants I had seen previously, including St Thomas’s had given me crap advice. I was truly shocked and questioned whether my illness was psychosomatic, whether I was actually making myself ill. The latest Rheumy has only seen me once and told me I have UCTD. When my GP tried to get advice for me she was told by one Rheumy I had MCTD and another that there was nothing wrong with me and that I was being discharged. It is demoralising and frustrating. It took me a few years to accept that I had Lupus, APS, Bechets, Pernicious Anaemia, Raynauds, Osteoarthritis, Underactive Thyroid, but now I am doubting everything again.

. You keep safe and well too and thank you xx

catno1
catno1 in reply to CecilyParsley

No need to be sorry I promise you. Just showing how I & I hate to think how many others feel the same.

7 weeks after discharge I had the next delight Three weeks of no sleep, extreme (& beyond polite description agony!) restless legs and stomach dumping. 6 kilos lost over those three weeks. And all because of Alendronic Acid. Did the consultant recognise how my body was knackered and the tiredness evident on my whole body? No. He decided I had cognitive problems. After those three weeks if I didn't have cognitive problems I wouldn't be human would I? Instead of concern and changing the medication he said see you in six months. All confirmed in a letter which I have to keep at arms length.

It took a locum GP to offer the change of medication (now on risedronate with zero symptoms) and to offer further pain medication after he was surprised how little support in that I had been offered. I'd left my local hospital as an inpatient on 26th November last year with just 100mg twice a day of Gabapentin on top of my usual medication to help relieve fracture, slipped disc and nerve damage. This GP was not happy at my lack of support and my version of what really happened. The side effects of that three weeks lasted until the end of February and have not helped even stubborn me to recovery until very recently. I'm 52 thankfully so not ready to give up yet.

Hearing deficiencies are rife in our care. I use the term care very loosely. If we have good care and support we are so shocked we walk out of the appointment like grinning idiots don't we? I have no doubt others recognise these thoughts of mine.

Believe in yourself. You are important.xx

CecilyParsley
CecilyParsley in reply to catno1

Yes I certainly recognise those feelings, mind you I have rarely grinned and almost always felt frustrated, angry and despairing. Funnily enough I rarely feel that way with other disciplines just Rheumatologists. I hope your recovery continues and thank you for your kindness and insight xx

catno1
catno1 in reply to CecilyParsley

I love your honesty. Thankfully we have each other on here. The reason I've written back is your words are recognisable and have been mirrored in my care. Sharing these thoughts helps but obviously doesn't do all we need to solve them.

Rheumo doctors often seem to burn out I've noticed. We all get old. And the added patients they have seen through the years who really could help themselves and don't require testing, medication etc etc must be frustrating for them BUT our lack of care can be disgraceful.

Take care and know your own mind. No doubts please.xx

CecilyParsley
CecilyParsley in reply to catno1

Thank you xx

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to CecilyParsley

Hi CecilyParsley,

Thank you ever so much for sharing your experience with us and how you came across LUPUS UK. We really appreciate all the support you have given to us over the years!

Wishing you all the best!

Thank you so much Chanpreet ❤️

Hi I joined to find out like maybe other on there consultants and general care and how it does affect us when we don’t get consistency in our care or treatment and have found it extremely debilitating over time and get list in doubt about oneself because of the issue above sadly I hope it improves in time for all .and hence joining here to save my sanity and fund the info and support that we don’t get generally 🤔

catno1
catno1 in reply to Loopyloo43

Because of recent problems myself I have just left a reply above yours to a fellow Lupus patient. I was sad and a little angry to see your thoughts that were so like mine as well. How many of us have to rely on sites and our own ability to research to get through our problems I wonder. We get diagnosed but this is followed by problems totally unrelated to medical conditions such as lack of care and support. Hope you understand my rant. It's 'one of those days' for me and I truly hate how so many of us are made to feel frauds and question ourselves and not the lack of care we get!

Keep going and keep well please,

A gentle hug & a x from me to you.

Hello Chanpreet

I think I joined in 2016 or so. I'd spent about 9 months feeling completely baffled by my symptoms following a diagnosis of "Interstitial Lung Disease". My rheumy was very casual about it all and my GP was unable to offer anything other than reading off some random pages of the internet. It was only when I came across this forum that I began to understand what was wrong with me and to get a realistic sense of what that might mean for the future.

It's a direct result of being helped by others here that I have remained as relatively sane as I have and have been able to take an active role in my own treatment. Other benefits of LUK membership have not been so immediate - not least because I can't access any of the social events - but I'm very glad to support a charity that unequivocally has our interests at heart (rather than being beholden to the pharmaceuticals industry or medical interests).

News and Views is a minor benefit to me; some of the links and technical/medical stuff is useful but its not a big reason for my membership.

X

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to whisperit

Hi whisperit,

Thank you for taking the time to share your honest and insightful experience of being a LUPUS UK member.

I am so glad to hear that this forum helped you during the time of your diagnosis, and that you are still an active member on here :). Thank you ever so much for supporting the charity, if you have any feedback on the News & Views magazine please, let me know in a private message.

Take care & best wishes!

Hidden
Hidden

Hi Chanpreet_Walia, I am a Lupus UK member from the US, I hope it’s ok for me to chime in.

How and why: Like just about everyone else here, my health took a major sudden turn years ago. I went on a journey to find out what was going on and how do I fix it? And also like so many here, in trying to be as proactive as possible and understand what is going on so I can make the best choices for myself, I started researching on the internet. I came across this site. I do not participate in social media otherwise, and this site and you who work for it, and the other members have been a true lifeline for me.

First off, the information in here is fantastic. I read different opinions about the same issues which gives me a look at things from more than one angle.

You, Paul, Kevin (and any and all others) are so very supportive and kind. Great at dispelling myths and rumors or mediating disputes.

The other members (now, my friends!) are generally so positive and so funny. It’s a great place to come and feel supported by others, to have a great laugh about our situation (laughter is the best medicine after-all), and just let go of our problems and realize it’s just a part of our life we have to learn to adjust to, but not the end of the world. Life is still very much worth living. The sun still comes up. Flowers still bloom. Birds sing. Life goes on, and we are still a part of that life. And, we are still important to life.

I have made some very dear friends in here in such a short time. I have found I can ask about anything bothering me and there is ALWAYS a sympathetic ear with a wise answer. Help from others with the same issue who have already figured out answers to the questions I’m just approaching.

So many on here who I feel are in a very bad spot in their own journey, and I admire and find to be absolutely incredible heroes because they come in here to lift others.

And again, so very many great humored people. Humor in the face of their adversities.

I started off this journey terrified at what it would mean to the vision I had for my life at this time. Now, I find joy in the journey, because of this site and all of you on it. You all have turned my fright and tears into joy and laughter, and I couldn’t thank you enough.

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to Hidden

Hi Brooksidecourt,

Thank you ever so much for taking the time to write this and share your experience with us. It's lovely to hear how much this forum has done for you and how your journey has changed. We really appreciate our positive members and how they're always ready to listen and help however they can! Thank you for all your support :).

Take care & best wishes!

Hidden
Hidden in reply to Chanpreet_Walia

Every word I wrote is true. It is I who thank you for this forum, your support, and your wisdom.

Since being finally diagnosed after years of feeling unwell, unexplained symptoms & made to feel a hypochondriac by my GP it wasn’t until I had some kidney involvement that my GP had apparently been keeping an eye on?! Casually said that he’s been watching it decline without even telling me in any of the appointments! Cut it short I had been sent from pillar to post and circles never seeing the same consultant and having to reiterate everything over and over again! I came across your Instagram page by a lady who has Lupus in the USA in which she mentioned you. From that day I followed you and although I’m not a paying member I have been wanting to get involved with your charity runs to help raise money for Lupus UK and for others to become educated and aware of the conditions associated under rare diseases as not enough is known. Even my new GP can’t help me when I have a flare up as he honestly told me he doesn’t really know how to treat me in times of a flare up but is extremely supportive, for that I’m grateful.

I think the biggest part of having an illness that hasn’t been fully diagnosed with clear symptoms and has skin involvement is a feeling that you aren’t taken seriously and also when Certain blood tests come back negative. It’s the uncertainty of what’s actually going on, which can cause Low self-esteem and depression in individuals because NO ONE is listening and even the effect it has on the family of the individual when they have to care for them whilst being unwell and they too don’t know what to do.

So thank you Lupus UK Paul_Howard , Chanpreet_Walia and team for consciously providing support, awareness and information.

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to Ironmytherapy

Hi Ironmytherapy,

Thank you for sharing this with us, it's interesting to hear that you discovered LUPUS UK through a person's Instagram in the US!

Your following and support means so much to us and we are happy to hear you'd like to fundraise for us through running when you can. That would be fantastic!

Take care & best wishes!

Thank you so much Chanpreet_Walia for your lovely reply and to all at Lupus UK!

I joined Lupus UK when I was first diagnosed because so few people had heard of Lupus & I felt a bit out on a limb. I became quite actively involved for a while and was very happy to do my bit. Sadly, once my husband died my activity had to reduce but I have stayed in touch and am still a telephone contact.

Joining Lupus UK is one of the best things I've done. I've met some amazing people & made some lifelong friends & the help & advice I have been given over the years has been invaluable.

The best £10 I ever spent ! 👍💜

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to HazelW

Hi HazelW,

Thank you for all your involvement in the charity and for providing vital support as a LUPUS UK Contact!

We are ever so grateful for you being a member of our charity :).

Take care & best wishes!

It has been an honour and a pleasure to be involved ! 💜

Hi I joined after being diagnosed in Nov 2017 with Rheumatoid Arthritis and Lupus by my neurologist, who I went to see initially with severe lower leg pain mainly at night, he did more in-depth blood tests and asked about my medical history.

As I didn’t know anyone or know much about Lupus I joined this forum.

Which I’m really pleased I did, very friendly informative information with a bit of humour thrown in between.

People there to prop you up when you feel down.

Thanks to all who reply.

Take care everyone.

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to Jhpc

Hi Jhpc,

I'm really glad to hear how this forum has benefited you, thank you for sharing this with us!

We have friendly and helpful members on here who are always willing to help however they can :).

Take care & best wishes!

Jhpc
Jhpc in reply to Chanpreet_Walia

You too Chanpreet take care x

Feeling alone with Lupus when diagnosed in 2005 I joined to find others with the same or similar problems. I'd never heard of the illness and it seemed back then neither had anyone else that I knew in my very limited circle. Wrongly diagnosed prior to proper blood tests done I was really fed up and angry. I've never comfronted the doctor responsible but was able to share my feelings in here.

I also found a local group that met for lunch every 2 months in my city centre. I asked if I could join them and was given a warm welcome. Must be 4 years ago. I haven't had much of a social life but this gave me an outlet and a chance to get out of the house for a couple of hours if I feel up to it. I'm very grateful for that.

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to chrisj

Hi Chrisj,

Thank you ever so much for taking out the time to share this with us. I'm glad to hear how the forum has benefitted you. This forum is a great outlet for many members on here :).

It's lovely to hear that you were able to join a local support group and meet up for lunch when you were able to!

Take care & best wishes!

I am not a financial member of the charity, but I have joined this forum.

It has been amazing in helping join the dots on symptoms that I didn't know were lupus related and also helped me manage my Lupus with pacing and actually saying "no, I need to rest now".

Chanpreet, you and Paul are really helpful and responsive and this forum is a life line. The general public cannot fathom the weird array of symptoms we live with and that someone with healthy glowing cheeks could possibly be ill and need a blue badge, but everyone here does.

It is so nice to have the support of others who understand. My husband understands but my birth family (I'm not sure what else to call them) really do not.

This forum has helped me accept the lack of understanding of others, and helped me deal with medical professionals, especially with understanding what it is my doctors might need to know. I automatically say, "I am really well thanks" like a trained seal, but it isn't actually true and I have had to teach myself to communicate to my specialists what symptoms I actually have had/do have. I also had a very bad Rheumatologist experience early on, and received a lot of support here as almost everyone has also had the same experience!

All of these things are so important. I'm sure many people have given up/felt useless or hopeless and certainly felt alone in their struggles before finding this forum.

Getting a diagnosis led to getting treatment and that (with lifestyle adjustments) has been life changing for me. I lived in excruciating pain before plaquenil and was so indescribably exhausted, I often could not maintain consciousness. I would not have received my diagnosis and treatment had it not been for Health Unlocked. I found this group via the Hughes group after my APS/Hughes diagnosis which came prior to my SLE diagnosis.

Please do let me know if you would like any further information or detail. Lulu.

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to Lulutopical

Hi Lulu,

Thank you ever so much for sharing this with us, I am happy to hear how the forum helped you in staying persistent and obtaining a diagnosis which then led to treatment. This truly highlights some of the benefits of this forum!

Your support means so much to us :).

Take care & best wishes!

Hi chanpreet

I’ m not able to print off a poster to place in my front window .

Please could I have one forwarded to my address . It would be much appreciated .

Kind regards

🦋❤️

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to Willow1414

Hi Willow1414,

The self-isolation posters were created by Chronically Awesome. You can purchase their posters at winstercreations.com/collec.... 50p from each poster sold is donated to The Chronically Awesome Charity.

Best wishes!

Hi Chanpreet

Thank you for this information .

❤️🦋

Hi chanpreet

I joined lupus uk a long time ago , in the days when it was the SLE Aid Group with Cheryl Marcus. having seen lupus mentioned in a magazine article I knew what I was suffering from as symptoms were so similar. I've kept the article too as a reminder. It helped me battle the doctors for a diagnosis as have the articles written in ' News and ' Views . I suddenly found so many people suffering similarly and I became 'normal' once more. I do find the articles on research so interesting . To show my appreciation I've joined my local group , always do your raffle tickets and helped to run my localC&C for a few years, only my health deteriorating stopped me from keeping the group going.

This forum has been such a lifeline as I too can't socialise like I used to and I've met some lovely, inspiring people and been glad to give my time helping fellow sufferers as well as helping research too.

I must just add I m so grateful to you all at lupus uk for all the helpful updated info you are giving us about this virus and our medication supplies. Thank you so much for working so hard on our behalf. Xx

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