Primary Lymphedema: It's not just about swollen limbs
My mother has primary hereditary lymphedema and so did my grandmother. My grandmother died of sepsis after having a hysterectomy at 38 years old. My mother is 74 and has struggled with the consequences of this condition all her life. When I was late teens my feet would swell a bit in the heat or after a night out dancing. When I was pregnant with first two children, my feet would swell but I was told that was normal in pregnancy. It wasn't until I was pregnant with my third child at 29 that my feet and legs started to swell hugely and they never went down. I was told it was due to blood pressure, which had risen in pregnancy and was put on diuretics and BP meds. Neither did anything for my swelling. That was 18 years ago. In the last 6 years my career has become deskbound and, as a consequence, my weight has increased by around 25kg (or 55 lbs). I can no longer fit any shoes. Any insect bite causes huge reaction that often requires IV antibiotics. I have had a few cases of cellulitis over the years. 9 years ago my right arm swelled massively and I had a subclavian blood clot (DVT in arm/shoulder) removed, first rib excision and a jugular turndown procedure to try and construct a new vein. I've never paid much attention to the diagnoses of my mother and grandmother but, two years ago I had a punch biopsy on my left breast. I was told the risk of infection was 1% and that it wouldn't be an issue. The following night I was in Emergency Department getting IV antibiotics for huge cellulitis reaction to infection. Three weeks later I was hospitalised with non puerperal (not breastfeeding or lactating) mastitis and ended up with sepsis, as three IV antibiotics would not stop it spreading. Finally one worked and I was released. A year later (May 2023) and I'm sitting at dining table and suddenly get a stabbing pain in left breast where had infection a year prior. By next morning I'm hospitalised again with non puerperal mastitis and am in hospital on IV antibiotics for over a week until it started to subside when they finally used the only antibiotic that has worked, flucloxacillin. This is when I started to research primary lymphedema and when I found how easily our body overreacts to minor infection etc, due to our sluggish lymphatic system. Then I found a sub type of hereditary lymphedema where a certain gene is responsible and often there is an extra eyelash condition present
I am now wondering if of a lot of my issues are actually due to this condition which I've never actually been diagnosed with. Hard here in New Zealand because our medical specialists are near to non existent. I have two daughters and a cousin (maternal side) with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Really interested in how these genetics are working. So keen to hear others' experiences.
#Lymphedema #primarylympedema #nonpuerperalmastitis #Ptosis #Sepsis #Cellulitis