Don't worry.

[New47]

Hi I have been told by my Opthalmic consultant I was born with Lupus I have to say I agree upon reflexion. No wonder my school friend called me Jauncice that was my nickname at school I would go round wil a bottle of pills! Now I'm 69 years young so try not to worry if you get a diagnosis it's not the death sentence it once was. 

[Barnclown]

Hello New

and SNAP: my version of lupus was first diagnosed very early...when I was barely a toddler...and here I am at 62 feeling better than I have since my 20s thanks to a wonderful NHS lupus & Vasculitis clinic....+ of course a typical collection of other multisystem clinics

What a lovely photo of you & this beautiful newborn!

🍀🍀🍀🍀 coco

[New47]

Barnclown your lucky my GP went with SS and destroyed my body, private healthcare I'm afraid if just 1 of the 25+ had asked a very simple question are you double jointed I would not be the cripple I an today! 

[linda96 in reply to New47]

Hi New47,

Hi, as my granddaughter we think has lupus I try and follow up on all the posts regarding people who have lupus as a young child. Please could you elaborate on double jointed please? 

Thanks

[New47 in reply to linda96]

Hi yes my mother had Psorisais and PsA with scoliosis my father had Ehlers-Danlos Syndrome. I was born with even more scoliosis than my mother plus I'm double jointed so I can bend my little finger backwards at 69! If just one of the 50+ consultants had asked are you hypermobile I would not be the cripple I am. So from my mother I inherited 3 blocks to my central nervous system at the neck, thoracic spine and severe lumbar spine which is a rare form of EDS Ehlers-Danlos EDSVIIC 1: 1000.000 plus Lupus and SS from my father I may have an even rarer type but until I know I can't speculate. All I do,know is I was. Born with Scoliosis and I stopped growing at 12. Plus I had mouth ulcers for as lo ago as I can remember. My Consultant Opthalmic surgeon said Lupus from age 3! I totally agree hence I'm aneamic always have been. Elders-Danlos isn't a disease it's a collagen disorder that now has MAST CELLS added. This can give you itching rashes, hay fever, asthma or in my case Crohn's! 

[linda96 in reply to New47]

Bloomin' Eck! What a combination you have! 

Iv got lupus, discoid lupus, from mum, thyroid from dad.  His family also had MS.  Mums family also had Parkinsons, which my sister has!  Iv also got APS, fibro, CFS/me, UC, cervical spondylitis, Sjögren's syndrome, some asthma problems, tinnitus, severe photosensitivity. 

Mums recently been diagnosed with hypertrophic cardiomyopathy (fortunatly I don't) but still going and will be 89 in August.

Inthink Iv had lupus from age 3, cus that's the time I used to be in bed for days at a time, lying very stiff and painfully.  

My daughter and ano granddaughter were seen by a well respected local sports physio and he said  THey had hypermobility.  It's amazing how all these things in the end get joined up!

Wishing you well

Linda 

[Barnclown in reply to New47]

Hello again New...sorry: missed your replies a year ago!

Yes, i have hEDS too (hypermobile Ehlers Danlos)..lots of joint subluxes & chronic internal organ (multiple GI conditions inc intestinal failure etc), prolapses (severe early onset prlapsed strangulated piles), paroxysmal haematomas (oral, hands, wrists, feet, ankles, shins mainly), spondylosis, chondrosarcoma (malignant tumour of the cartilage in a joint that suffered a severe subluxation), heart murmur & dysautonomia, i could go on & on.....etc etc...hEDS runs in my family.

I am especially unusual, though, in having early onset immunodeficiency running alongside the infant onset systemic lupus diagnosis...specifically hypogammaglobulinaemia G,A,M. immunology take care of monitoring & treatment for this bone marrow dysfunction, which is the reason for my seronegativity...immunology is now investigating me re Mast Cell Disorder too

My husband of 30+ years & his sister have early onset crohns

Hope you're as "ok" as poss now...did you get your EDS genome test?

😘🍀😘🍀😘🍀 coco