My life with Lupus, etc.!

[picinisco]

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.

[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 in reply to Barnclown]

PS is there any chance you were exposed to DES:

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