Interesting medical article on multiple auto immune diseases

[ATVMWF]

Apologies if this abstract paper has been posted before but I only found it yesterday even though it was published in 2010.

I think some of you may find its contents interesting.

ncbi.nlm.nih.gov/pmc/articl...

ATVMWF

[Helloit]

Thanks for sharing I have been diagnosed with four autoimmune diseases.

[waveylines]

Thankyou. There's been some fascinating research following this on. I have been diagnosed with 5 autoimmune. The core one initiating all of this is Vitiligo..... Once thought of as a harmless skin condition... no longer regarded as such . Clearly in my case hereditary as several generations of my family have/had it.... all on my Mums side. Interesting though my Aunt had Sjorgens but no Vitiligo.Loads more research needed....

medlineplus.gov/genetics/co...

[ATVMWF in reply to waveylines]

Hi Wavylines,

I thought it was interesting that they concluded that Vitiligo, once thought of as quite a benign condition, was the precursor to many A.I. conditions. When I was diagnosed with it at 15 years old, doctors more or shrugged it off. I showed active signs of hypothryoidism from about 20 but didn't get treatment until I was 46. I have Sjogrens and Reynauds as well. I have never been checked for any other condition but any specialist other than what they were asking about at the time. What this research confirms is that once you have Vitiligo you should be checked, or monitored for other A.I. conditions. If this were done it could save years of misery for people.

ATVMWF

[waveylines in reply to ATVMWF]

I was diagnosed at 21 but had signs of Vitiligo from 16. Like u my GP was very dismissive, said it was harmless & nothing they could do about it. I felt like I couldn't say any more. Pregnancies fast tracked it... Turning to universal Vitiligo, likewise autoimmune conditions started racking up. Though optician says all looks well I have also developed light sensitivity and wear transition lenses.... Sheer Bliss.I don't know if you could screen for them on a regular basis. Eg. I've never tested positive for coeliac and now a few years on renowned NHS consultant says I carry the gene and he believes I am Coeliac due to symptoms and brain scan shows damage typically associated with gluten.

I do think the medics should be far more on their guard re autoimmune conditions then they are.

[ATVMWF in reply to waveylines]

Hi Wavylines,

This is like reading my own life story, minus the pregnancies. Had such significant gynae issues had to have a hysterectomy so that scuppered chances.

I tested negative for Coeliac but had such awful problems I went GF 5 years ago and 98% of my stomach, headaches and 'toilet' issues resolved.

I am also light sensitive and have been thinking about transition lenses. I wear sunglasses a lot. I have very, very dry eyes and use a lot of eye meds daily.

My extended family Aunts, cousins etc) has just about every A.I. condition bar Lupus. One cousin has just recently been diagnosed with GPA which was previously known as Wegeners disease and is quite rare apparently. I am the only one with Vitiligo and Sjogrens though.

ATVMWF

[waveylines in reply to ATVMWF]

Gosh we are simular except Vitiligo is in my mother side of my family. My brother, cousin, grandma all have/had it. My Aunt mums side had Sjorgens, my cousins mums side has rheumatoid arthritis. Interesting Altzeimers runs rife on that side too.... So I noticed the incident rate is much higher in people with Vitiligo. There will be a connection that links this all together I'm certain. Science just isn't advanced rough to find it.None of my family have multiple autoimmune conditions like me but I think it's because my Vitiligo is so advanced.

[ATVMWF in reply to waveylines]

HI Wavylines,

I think the Vitiligo is the key but perturbed about Alzheimer's. Noone in our family line that I know of suffered from that and I don't want to add that to the list as a connection. I have seen close friends succumb and that is truly awful...

There needs to be a lot more research into A.I. connections. I am a strong believer that whatever is in your family line via your genes is the main factor to whatever you ail. It makes perfect sense if you look at those families that have high incidences of heart attacks; breast cancer; A.I. conditions' Alzheimer's' strokes etc. There will be some socioeconomic factors that will affect all of them but the overriding determinant is imho -genes!

ATVMWF

[Flaxjax]

I have 3 - MS, Psoriasis and Hypothyroidism. Each one, in my experience, is considered separately by clinicians and when you mention the others it's almost like you've said you've got an ingrowing toenail for all the difference it makes 🤣 if anyone has had a different experience I'd be very interested to know 👍 My ultimate hope is that the person is considered holistically but I'm yet to experience that!

[waveylines in reply to Flaxjax]

I don't think that will ever happen tbh. These specialists have their specific field so unless someone develops a specialism for autoimmune diseases we will continue to be referred to different departments. I'm still surprised that plenty of blurb out there still describes Vitiligo as a harmless skin condition... Ignoring the fact it appears to be involved in some way of triggering other autoimmune conditions! I struggle even with factor 50 not to burn in the shade in the UK on a sunny day.

[Flaxjax in reply to waveylines]

<sigh> auto-immune specialist, now wouldn't that be a marvelous thing. So sorry you struggle with the vitiligo... I am 'lucky' in that I'm only affected badly enough to be treated for the hypothyroidism (I'm not ill enough with the others to be treated) but they all obviously stem from the same source IMO. I'm on a lifelong quest to 'fault find' my body 🤣 I trained as an engineer so it's in my nature to try and fix this at its ultimate source!

[ATVMWF in reply to waveylines]

Hi Wavylines,

I agree just a pie in the sky wish

I have had Vitiligo most of my life now. Developed when I was 15 years old and as you can imagine it caused me upset as I could not wear nice strappy tops etc that all my friends were wearing. It was 52 years ago so people were not as tolerant then of skin conditions and people often made horrible comments and shied away from me in case it was infectious. I was never able to go out in the sun and I get awful rashes, which I now know are part of the Sjogrens, so suspect I have had for most of my life, just undiagnosed. I had my first test for Hashi's aged 20 (borderline) and didn't get treatment until I was 46. By then I could not function and could barely walk....

ATVMWF

[waveylines in reply to ATVMWF]

A... It's a good idea.... & u never know....

I share your thoughts on the horrible visual stigma Vitiligo brings & I too used to get stares and unpleasent comments too..... These days I look pale and lilly white.... Far less stigma.....

[ATVMWF in reply to Flaxjax]

Hi Flaxjax,

Yes, I agree when you present with one condition to a consultant they never look at the 'whole person'. Doing so could save years of misery for the patient and actually get early diagnosis and treatment for many. The medical profession imho has become little more than a profession intent on giving tablets to mask symopms, rather than trying to get to the root cause of the issue.

ATVMWF

[Sparklingsunshine]

I remember when I was first diagnosed with hypo 3 years ago, the assumption was it was autoimmune. I had the misfortune to be going through the whole diagnostic faff during covid, when we were pretty much warned off troubling the NHS unless actually dying.

As a result my hypo care was pretty poor. I was left on a starter dose of 50mcgs of Levo for months and no blood tests were carried out. I had to really push for the antibody blood tests. Eventually mine came back negative and as I did private ones about 2 years previously it looks as though my thyroid issues arent autoimmune.

I think its important that people are tested for autoimmune conditions as having one increases your chances of getting another, which doctors need to consider when trying to diagnose us. I have pernicious anaemia and so was surprised that I didnt have Hashis.

[ATVMWF in reply to Sparklingsunshine]

Hi sparklingsunshine,

I agree that doctors should be checking for multiple A.I. conditions, especially as you say when you already have one. Interesting that your thyroid issue was not Hashi's when you have P.A. My mum had P.A. and parathyroid problems so I knew that it could run in families.

I would keep checking for antibodies every year, or so, just in case because you have only been recently diagnosed and it may be that the levels of antibodies may increase. over time.

Covid caused lots of problems with getting access to consultants and diagnosis. I waited 4 years to see a rheumatologist to get all the required tests to confirm I had Sjogrens. A.I conditions are complex and what patients really need are 'one stop shops' where we can be seen by multi specialists but think that is too joined up for the NHS to consider.

ATVMWF

[serenfach]

i am on my 7th (just diagnosed autoimmune lung disease), The others are vitiligo, Raynauds, Dupuytrens, Ledderhose, arthritis and Hashi. None of my family have anything! Sometimes I wonder what I did to him upstairs...

[jade_s in reply to serenfach]

My other family members started getting some of my issues many years after i started having problems, even the older ones. I was just the trailblazer LOL

7 is a lot though isn't it 😥🙏🙏

[ATVMWF in reply to serenfach]

Hi serenfach,

Wow! you have certainly drawn the short straw -7 conditions! that is unbelievably unlucky and must be hard to live with. Big hugs!

Out of curiosity, which condition came first?

ATVMWF

[serenfach]

Thanks for the hugs. The raynauds came first, as a child. I was an outdoor child, and a huge crop of chilblains most of the year! The vitiligo came next when I was in my 20's, but only really went mad when I was in my 40s. Then the Dupuytrens in my 30s, operated on but came back pretty quickly. I am now too old apparently to have the operation again. Most GPs just look in wonder at the Ledderhose, never having seen it, but dont do anything and it does not bother me so far!

The Hashis only hit after an operation went wrong and I was given a huge dose of iodine by mistake. (and the wrong anaethetic, and the wrong surgeon!).

The lung disease has hit me the hardest, as it will do for me in a few years. Hey ho!

[ATVMWF in reply to serenfach]

Hi Serenfach,Hadn't heard of ledderhose at all and it sounds pretty awful. I have plantar fascitis and that is painful enough.

I hope you sued the surgeon/NHS when that operation went wrong? Unbelievable....totally incompetent!

I have a friend with Dupuytrens. She has had the operation but to little effect. Her fingers are slowly going claw like and she is losing her grip.

The lung problems also sound pretty awful. I hope that a new treatment is found that will help, they do find them occasionally. We can only hope that something will alleviate the problems you are having.

Take care

ATVMWF

[serenfach]

Thanks. I did sue them as I had legal cover through the NFU - probably got the worst solicitor in the world. The hospital blamed me for "making my artery go into spasm while unconscious" and the solicitor did not fight it.

Go on, try while conscious to make an artery go into spasm....

Yes, I am still bitter.

[ATVMWF in reply to serenfach]

Hi Serenfach,I am speechless and that doesn't happen often, I can tell you. What an utter a*se! I would be bitter too...but sometimes for peace of mind, you have to let go.

Take care

ATVMWF