Lupus Awareness Month....what can we do? ☀️

[eekt]

Hi lovely folks! 👋 Soon be October and Lupus Awareness Month. How about a plan?

The following was not written by me (if only I could write so

eloquently and without profanities! 🤬...): a fellow warrior in the fight against ignorance sent me it, with permission to post.

If everyone sent it to just one doctor, that could be 20,000 better-informed medics! 😁😁😁

Be well! xxx

A message to the medical profession

To the Drs who listen and believe us

Some of us search for answers and help for many years, trapped and powerless in the diagnostic wilderness, our brains and bodies weakened by the disease, waiting for understanding and validation of our suffering.

If you have been the Dr who has held our hands as we cry in relief at finally being given a diagnosis that no one would want but that provides an explanation as to why our lives have changed so much. If you have been the Dr who has listened to us with empathy and compassion. If you’ve been the Dr who has given us the safety and security of knowing that there is someone now on our side. If you’ve been the Dr who listened to us, who believes us and helps us lead the best life we can.

If this is you, please know that our depth of gratitude is immense. You are true heroes, you have not just saved lives but also allowed many of us to live with hope again. Hope that we can lead more normal lives, contribute to society, be the mothers, fathers, daughters, sons and friends we so desperately want to be. Hope that even on the darkest of days, when life is a black net of pain, fatigue and confusion, that there is someone walking with us through the darkness who has the strength and knowledge to guide us.

To the Drs who don’t

We do not expect you to know everything about such a challenging varied disease. Please learn with us, try not to be insulted or intimidated by the depth of knowledge only specialists in our disease and the people fighting this disease have unwillingly gained. Work with us, combine it with your intelligence and great breadth of general medical or specialist knowledge and stand with us in our battle.

Please remember that although most of you will not fully understand our disease, that you put us in grave danger if your lack of understanding leads you to deny its existence. For those of you that make us feel that it’s all in our head, or we are overly health anxious or hypochondriacs because you do not know enough about the disease that is attacking so many parts of us, please think very carefully because you damage our chance of a better life, sometimes our chance of survival.

It is not just the lack of medical help, medication and support that damages us but your denial of something so overwhelming and brutal in our lives, distresses, depresses, damages and demoralises us so deeply that our ability to fight another day is much reduced. The disease takes so much from us; please don’t also take away our self-esteem and belief in ourselves as you do when you refuse to validate our suffering. We are not imaging our symptoms; they are as real as other diseases just less visible to those who do not understand our disease. It scares and upsets us greatly that we know through our own experience and that of so many others with lupus, that the people we must turn to for help can be more of a danger to us and inflict deeper wounds than our disease.

Please understand that we will be greatly strengthened just by your presence, compassion and most importantly, belief and support in the battle we will be facing for the rest of our lives. We don’t have the strength left to fight you too; we need to trust you and know that you are on our side.

[eekt]

Today I saw the GP who diagnosed my lupus rash as 'ringworm' in 2007 - FFS (sorry! 🤭) symmetrical, both hands, no ring?!? - (SLE diagnosis 2015), tanned and relaxed, no doubt just back from his home in Cyprus - where he likes to spend as much time as he can - and I will devote my first letter to him 🖕💪🤩

Do it! It will be a great release! 🌋🚀🎆

I'm so looking forward to copying it to his GMC Revalidation Officer! xxx

[Melba1 in reply to eekt]

Are you going to tell him he’s in the second category of drs and how nice it would be if he could be in first?! I might send it to the neurologist who said my neurolupus was a bit of a headache and the best treatment he could give me was reassurance - and that the rheumatologists (who told him he was wrong - he did not enjoy that!) were overprescribing Mavericks who hand out steroids like smarties so not to listen to them 😱

X

[eekt in reply to Melba1]

Jesus wept. A headache? Not to listen to the Rheumatologists?

I've had reassurance by the bucketful. Lastly from the Rheumy, who said my negative ANCA is reassuring...

Thanks Melba1, your medical story really is 'The Scream'! Be well 😘 xxx

[Kevin53]

Dear eekt

Is it possible to use this in News and Views?

Best wishes

Kevin

[eekt in reply to Kevin53]

Yes, of course, if it would help even one person be less badly treated! Thanks xxx

[Kevin53]

Yes, we can’t help everyone; yet everyone can help someone..,...the beauty of HealthUnlocked

[eekt]

Did you know....'wilful neglect' by doctors is now a criminal offence: lexology.com/library/detail... (Scotland only). In England and Wales it's sections 20 and 21 (I think, limited internet) of The Criminal Justice Act.

It doesn't cover honest mistakes of course. xxx

[Milliecox]

Your idea of writing letters seems a great one for lupus awareness month - we're trying to do this in Cambridge and have put up some ideas on the website and facebook page. We're thinking of politicians as they are the only people who can change the system. So many need an increased understanding of how it can fluctuate and that it causes (at times) crushing fatigue...schools, universities, unions....

[eekt in reply to Milliecox]

And indeed doctors...😁...we need more 'aware' doctors - like Melba1 's Rheumy laying it on the line to skeptical others.

You're right, politicians have ultimate control! And there have been legislative changes as the result of strong lobbying eg entitlement to ESA higher rate (I think, no expert) now applies to any cancer sufferer receiving chemotherapy OR radiotherapy, based on the emotional impact of such treatment. (Does not apply to someone with SLE on chemotherapy).

The Equality Act includes three conditions that automatically meet the Act: cancer, MS and HIV. Yes, fluctuating disease are covered, but each individual has to prove they meet the definition of 'disability' in the law, which is a traumatic and distressing process, medical records laid out in the public domain.

I corresponded with the ScotGov Health Minister via my MSP on Managed Clinical Networks north of the border (in a previous role she had pledged to set up one for SLE as there are no Centres of Excellence here) and the result was a shrug of the shoulders. 🤷‍♀️ It's only 5,000 people.

Thanks for replying, I could go on and on and on..

Would be fabulous to know your approach! Be well! xxx

[Milliecox]

Thanks eek the equality act is really inconsistent in recognising one fluctuating autoimmune disease (FAD) from the day of diagnosis and cancer - which for many now, thankfully, is a curable disease, an episode.

I could go on and on too but I really think we need to get political as many gov policies seem to me to fall into the category of secondary discrimination - female, age (young people) BAME.

The Cambridge group have letter writing ideas on our facebook and website pages - and we hope that a few will go off.

Will reply again at a more reasonable time of day - thanks for getting in touch

[eekt]

Since it's Our month, I'm going to ask my GP how many SLE folks the practice has on its books...Lupus UK has HUGELY varying figures on prevalence (lupusuk.org.uk/wp-content/u... as it's under-diagnosed, probably under-reported, poorly researched and quite possibly - like dementia, last year a two-fold increase in dementia was reported, due to it being noted as cause of death more often now, rather than the complications - not noted as such.

This UK study from 2012 says nearly 1 in 1000 prevalence, folks being treated:

ard.bmj.com/content/early/2...

My nurse at the rheumatology clinic reckoned they had about 50 cases on their books, and that would be about half the prevalence it should be.

Wouldn't be good if GPs thought, when confronted with the dreaded 'medically unexplained symptoms' cases - or somatic disorder - 'well statistically we're short on SLE patients, could this be one of my rare diseases* cases' ???? xxx 🤩🤩🤩

*rare disease are not so uncommon - they will affect 1 in 15 people - World Health Organisation!

[Paul_Howard Partner LUPUS UK in reply to eekt]

It is very interesting to see how varied the prevalence rates can be based on different studies. This is why in the report we published with RAIRDA we stated that lupus is estimated to affect around 25-96 per 100,000 people. The findings vary based on the population studied and sample size.

The prevalence of lupus is something which is under studied and further funding is needed for this. It would help us in identifying any trends, such as whether lupus is being diagnosed more and/or whether prevalence may be increasing.