A short article From The Daily Mail

[MaryF]

dailymail.co.uk/health/arti...

Mary Fx

[InSpain]

An excellent article. I admire you so much for sticking to your guns and getting what after all is rightfully due to all of us, good treatment AND especially for any child too. But isn't it a shame that it has to come to this before any help is offered. I'm going to sound like my mother now but what is the NHS comming too? xxx

[MaryF Administrator]

Thanks, yes it took me years to sort it out, and all because I moved house! Mary F x

[Tiggercat]

Excellent article. Nice also, to put a real face to your name Mary. Keep up the good work for everyone.

[MaryF Administrator in reply to Tiggercat]

Thank you, my secret is out, I don't have purple hair! Mary F x

[InSpain in reply to MaryF]

I used to in the days of punk rockers!

[MaryF Administrator in reply to InSpain]

Well in the mid 1980's I had sky pink hair the colour of a stabilo marker pen.... I felt I looked most cool, until I went swimming on Brighton beach, posed afterward of course.. not realizing I had been striped bright pink from head to toe, which was of course why people were staring at me! Mary F x

[InSpain in reply to MaryF]

I once used bleach to go blond - I never realised that when you get in a swimming pool the bleach and the chlorine mix and your hair goes green! Well I soon found out - Just call me a trend setter!!!

[MaryF Administrator]

Thanks xMFx

[InSpain]

Ditto APsnotFab xxx

[MaryF Administrator in reply to InSpain]

Ta. Mary F x

[Hidden]

Brilliant article Mary. Well done for getting your story put there.

[Hidden]

Or even *out* there!

[MaryF Administrator in reply to Hidden]

Thanks. Mary F x

[Squeezer]

Wow- well done, Mary! And what beautiful children you have

It was a lovely surprise to see that you are a fellow bellows squeezer too!!

Hxx.

[MaryF Administrator in reply to Squeezer]

Thanks, a house crammed with instruments, unfortunately my son's drum kits is underneath my bedroom! Mary F x

[Squeezer in reply to MaryF]

Sounds like ours- minus the drum kit though, thankfully! Hxx.

[MaryF Administrator in reply to Squeezer]

xx MFX

[soul22]

Thankyou for your perserverance not only have you saved your childrens lives but raised awareness.thks daily mail for.printing article.reminds.me.my.oen battle to.be heard .a junior rheumy doctor heard me referred me to best sito.immune dermatolgist in.uk.who knew exactly what i have did right tests a new gp heard this re referred mevto new hospitsl lupus clinic who also knew what wrong get best care now.if id not presvered with gps specilist things could been very serious for me..thls mary f my fellow suffolk sufferer

[MaryF Administrator in reply to soul22]

Thank you. Mary F x

[Jillymo]

You remind me of myself when i was younger I would go all out to get answer's !

It is one thing having to suffer this illness our selves but when it is bestowed onto our offspring then we tend to battle that bit harder, I admire you for going full steam ahead.

My uncle played the sqeeze box ! i loved to listen to him play.

Grand looking kids Mary. Jillymo X

[MaryF Administrator in reply to Jillymo]

Thanks. Mary F x

[suefessey]

Well done Mary. xx

[MaryF Administrator in reply to suefessey]

Thank you. Mary F x

[Everdean]

WOW! Thank you for that Mary. Well done. I have lost a lot of faith in the medical profession after being told I had terminal cancer and had 12 months of Chemo. When I was told I didn't have long to live I asked for a second opinion. They then found I didn't have terminal cancer. It had been removed 2years before in an hysterectomy. They had been reading the scans wrong.

All that Chemo for nothing and I haven't been well since. That was in 1994.

Susan x

[MaryF Administrator in reply to Everdean]

Hi, my bad experiences have been counter balanced by good ones.. I know at times care is bad, but I still believe there are good people out there and some real excellence, and I am sorry to hear you had that awful time with your care. Mary F x

[Everdean]

Thank you Mary. X

[SueLovett]

Thank goodness you were persistant and brave, Mary, or the outcome for you and your children could have been tragic.

By the way you are a LOT more attractive than Mrs S!

xx

[MaryF Administrator in reply to SueLovett]

Thanks: I do like powerful lady Icons! youtube.com/watch?v=YV6Q4Q9...(Not working as expected?)

Mary F x

[tim47]

Result! and an example to us all. Well done. (and thanks for making us aware of the HDA)

[MaryF Administrator in reply to tim47]

Thanks, they came to the 2012 Patients Day at St Thomas' and have remained very interested and discussed it with many medical doctors/consultants at networking meetings, I check in with them all the time! Mary F x

[Jade]

Well done Mary, such a struggle we often face. And sad too that when we most need the help we have to begin fighting, but when it's your kids too that's even worse.

I feel very guilty that I am responsible for giving 2 of my kids an autoimmune disease.

Well done getting the Daily Mail to run your story too.

Nice to put a face to a name, you actually look like the way you write if that makes sense.

[MaryF Administrator in reply to Jade]

Thanks. MF x

[Zezes-nan]

Brilliant article as the others have said nice to put a face to a name and thank you for making us aware of the HDA.

[MaryF Administrator in reply to Zezes-nan]

Thanks. MaryF x

[Elfie1]

Gosh, I've just read the article, I've never even heard of the HDA it's amazing what can be achieved when u persist. Perhaps we could do away with the careworn NHS and start again with the HDA. Well done,thank u for bringing this to our attention.Ps.glad u don't really look like Mrs.Slocum ha,ha

[MaryF Administrator in reply to Elfie1]

Thanks.. the NHS still does a good job.. it just gets ruined at times by people messing about with it and not dealing the hiccups fast enough.. Mary F x

[Jillymo]

Hello Mary,

I wonder if you can help me ? I recently saw Proff Mchugh in Bath who now wants to send me for coping skills ! I feel this is some sort of joke.

I am very unwell & showing clear symptoms of Sjogrens but the consultant just comes back with this is unlikely......what is all that about.when they have not fully tested me

I have been to see ophtalmolagist only last week, she did the test where the paper is put in the eye & agreed my eyes are very dry.

She has prescribed stronger lubricating drops that I am to use every 2hrs & lubricating ointment at night.......I already had drops & mouth spray prescribed by my Gp previously.

Sjogrens is not showing in my bloods so i'm now being pushed to a coping skills programe.....this just adds insult to injury when i showed him photos of my mouth covered in blood from the dryness....full blown livido rash......eyes fiery red & blood shot ect.

Please advise me all i get is comments in letters to my Gp it's unlikely she has Sjogrens........what is all that about when they have not carried out all the tests ? Help I could cry. Jillymo X

[MaryF Administrator in reply to Jillymo]

I am so sorry, I know it's difficult, as said below, you might need to push for an APS consultant or even perhaps a private appointment as a self referrer to remove any obstacle. My results came back, as positive for lupus with a mixed connective tissue result and clinical history of Hughes Syndrome, in conjunction with many relatives, past and present, wishing you luck. MF x

[Jillymo in reply to MaryF]

You could be right Mary maybe that is what I have got to do.

As for obstacles i have had that many you would think I was immune to it but I'm so desperate & feel gutted.

My relatives have passed on so I couldnt investigate there history but my son has the same as I.

It makes you battle that much harder for your children hoping they wont be pushed down the same awfull path..... unfortunatly you know what i'm talking about. Take care Jillymo x

[Jillymo]

Oh Aps you girls messaged to late. The letter has been on my mind all day & rightly or wrongly I have emailed Mchugh.......Ops

I did see the referal letter from the Gp I paid to have a copy, I know this is going to sound daft but for the life of me i couldn't tell you what was in it ! 'My head is swimming'.

If you remember Aps iI was late for my appointment due to the driver getting lost.

I didn't feel I had said what i had wanted so wrote a detailed letter to the Proff in a nice manner, I even finished with what a pleasure it was to meet him !

I had an episode some years back where i went partially blind in one eye so i was investigated for a stroke.

They found I had sticky blood so put me on asprin which was stopped after 18mths due to it irritating my gut.

In this letter it states the eye issue was diagnosed as Amaurosis Fugax this is the first i have seen this condition.......so as you do I looked it up.........it is a condition where you are at risk of a stroke.

I will have a look on the site you have mentioned.......thanks for your advice. jillymo x

[SammyJ]

Well done you Mary, what a great article, fair play to you, it's great to get these diseases out there and for people to understand what we live with, fantastic. Sam xx

[MaryF Administrator in reply to SammyJ]

Thanks. Mary F x

[Annslack]

I have only just seen this. Well done and nice to see you and your lovely children . Great that such an organisation exist s. Ann