Base

Name

Louise Rachael Mwape Miller

Nickname

louise-rachael-mwape-miller

Year of Birth

1984

Gender

Female

Location

Leeds

Relationship

Patient

Short Bio

I am a 35 year old half Zambian and half Moroccan woman, living in Leeds UK. I have sickle cell trait, but suffer symptoms of sickle cell since the age of 5 when my mum first came to the UK with me. I was born here, but we went back home to Zambia when I was still an infant. Back home in the heat I never suffered, but as soon as we came to the UK, I began having regular crisis especially during winters and often in summer when I would be playing outside with my friends and super active. Throughout the years I’ve often been super anaemic, often missing out large chunks of school and having a bad sickness absence record due to frequent infections including pneumonia and pyelonephritis and flu often. I find now I am able to research for myself and there is more info out there that I’m able to push for medical intervention, but as a trait patient, who is deemed “medically insignificant” it is very lonely as I come across many trait individuals who are asymptomatic as per the usual research. Further research has suggested that there are many strains (over 50) of sickle cell now and super sickle variants include Hb Oman and Hb Antilles, so I’m pushing for a referral to haematology with a letter of recommendation from a Sickle Cell Nurse Counsellor at the Leeds Sickle cell and thalassaemia centre, but it has taken me complaining to my gp surgery to even get as far as having them do me a referral, as I was told it is very rare for trait individuals to suffer, yet does that mean I am not one of the rare ones. When I’m healthy and well, I’m really well, but when I’m unwell, I’m really bad. I’ve also lost two children after delivering and almost died myself during the 2nd labour yet the medical professionals did nothing to ensure my safety nor did they even think to check whether my previous and ongoing status had anything to do with it, despite research suggesting that sickle cell trait presents it’s own complications during some in pregnancy. I feel very lonely going through this, as I dont feel I have the right support, because I dont need hospitalisation as yet for my pain crisis and have given up going to the doctors, just would like to find others like me who carry the trait and have experienced similar problems. This forum hopefully will allow me to connect with many sickle cell anaemia patients who i can relate to on a much milder level where pain is concerned, as I know carrying it is nowhere near as bad as having the disorder fully, but hopefully can also create an awareness of trait individuals who suffer regularly with pain and vaso-occlusive crisis and anaemia in relation to sickle cell.

How did you hear about us?

Other

How long have you or the person you are caring for had Sickle Cell Disease

All my life but symptomatic for 30 years as far as I can remember

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