My life with Lupus, etc.!: I'm new here. When I was... - LUPUS UK

LUPUS UK

32,072 members28,393 posts

My life with Lupus, etc.!

picinisco profile image
2 Replies

I'm new here. When I was born, my parents were 'not allowed' to see me for a number of days...that concept sounds crazy today but that was 1954 when that actually happened. My mother was Rhesus Neg blood group, I was Rhesus Pos...I can only guess there was a mother-baby blood type incompatibility. I 'looked' a very healthy baby/child but was often 'unwell'n bed, fatigue, 'growing pains' as then described...and spontaneous bruising. That was age 7, by 17, bruising , bleeding (heavy menstruation) prominent. By 19, I underwent Splenectomy for auto-immune Idiopathic Thrombocytopenia, thought to be the natural precursor to Systemic Lupus Erythematosus , which was 'finally' diagnosed, age 22. My prognosis was not good. By then, I had done S.R.N. training (chosen to do in 2 instead of 3years). I collapsed before my final exam. However, all my intense studying served me well, in my future life of so many medical conditions. I believe 'knowledge is strength' and being a well-informed patient can literally save your life...the N.H.S has become overwhelmed, especially by Covid 19....you have to manage, observe & correlate your symptoms, requesting blood tests wherever necessary. I have MANY medical 'labels' - Past history of the I.T.P. I mentioned, Systemic Lupus Erythematosus/Mixed Connective Tissue Disease/Interstitial Lung Disease/Raundaud's/Sjogren's ...and, sadly, since a totally unexpected Myocardial Infarction, this Sep 12th. resulting Left Ventricular Cardiac Failure. I say 'unexpected' as not recognised in any 'high risk group' (not obese, lifetime non-smoker, non-drinker past 2 years, vegetarian since 1981, 'etc' ) HOWEVER, now clear, one of many (Including 'young' ) women with Lupus , diagnosed with Cardiovascular disease, including 'accelerated atheroma' . I have faced MANY 'challenges in my life...this counts as one of the most challenging! As local Cardiology follow-up / Cardio Rehab ceased with Covid19 taking precedence, my above-mentioned 'self knowledge' has been invaluable in monitoring my cardiovascular problems. This includes readjusting to many cardio-medications, including Entresto on 4th December.

Written by
picinisco profile image
picinisco
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Barnclown profile image
Barnclown

Hello picinisco: just read your powerful, deeply thoughtful & fascinating reply to Wendy’s SLE/cardiovascular post (maybe you saw my contribution to that...this issue has been a biggie for me ever since I was born in 1954 & diagnosed with infant onset Lupus in 1955.

Anyway, after reading your reply to Wendy, I found this post & then read your profile and became even more fascinated. Partly because your professional background adds an interesting dimension to your descriptions & observations, and also because we have stuff in common. Eg my parents’ Rh incompatibility resulted in 10 devastating years of miscarriages after my brother’s birth....(i was finally born after my mother spent 5 months in bed taking daily doses of the internationally notorious endocrine disrupting synthetic oestrogen diethylstilbestrol (DES) aka the Hidden Thalidomide....which my consultants suspect tipped my genetic predispositions into the very early onset lupus)

Am sorry I didn’t spot your post earlier...have been very distracted by the latest twists & turns my comorbidities have been throwing at my medics & me 😉

So, I just want to say how glad I am you discovered our wonderful forum...& thank you for posting 🍀❤️ Coco

Barnclown profile image
Barnclown in reply to Barnclown

PS is there any chance you were exposed to DES:

rarediseases.info.nih.gov/d...

Not what you're looking for?

You may also like...

Living with Systemic Lupus

Hi to all 😘 I've had systemic lupus for 10 years and l was diagnosed when my first child was born....

Lupus and Stress

I posted this blog on my own site today. I took me a while to frame what I wanted to say, but I...

New study which looks at diet and weight loss in lupus patients taking steroids

Just wanted to share a recent scientific study with you all: Davies R, Lomer M, Yeo S,...

Lupus info needed please

Hi everyone, I am a medical student and in the process of writing a project on systemic lupus...

Take part in a psychological study looking at how lupus affects quality of life

***Please note that this study is no longer seeking participants. Thank you to everybody that...