Hello, I am new here and happy to have found this platform.
I have gained more knowledge, from reading what everyone or most of us are going through and more tips on curtailing the disease.
I can assure you that SCT is a disease and let no one tell us it’s not, because we know from our typical experience of pains in our bodies.
It’s annoying enough that Doctors won’t listen or believe us but it’s more hurtful that someone having the same disease as us but escaped pains through the grace of God could tell us we are lying.
We are not stupid or crazy!!! Millions of us can’t be crazy at the same time.
My story is duplicated here from my response to a Nigerian Pharmacist ( Oloh) who has SCT but thinks just because he/she does not have symptoms or pains, then we are making our symptoms and pains all up, and that we need to be enlightened!
To Oloh, the Nigerian Pharmacist.
Pharmacist my foot.
How dare you?
How dare you say and I quote “ Can the administrator of this group get an experienced physician to enlighten all of us about this?”
You must be mad!!! Are you telling us we are all crazy and don’t know our right from our left.
It is evident that you are the ignorant one here, the fact that you have SCT and don’t experience pains and symptoms, count yourself lucky and thank God. However, it does not give you the right to say we are all lying.
SCT, SCD and SCA all have degrees and we are all different, that’s why even twins do not have the same DNA.
Get that into your skull and do your research well.
It is annoying and painful that the doctors and the Sickle Cell Society will not do new research other than the outdated results they have regarding SC . They should stop playing with peoples lives.
I am also a Nigerian with SCT and have symptoms and been in pains for about 13 years now.
I realised I have SCT at 26 years of age after been hospitalised at Lewisham Hopital for a brief illness.
Before this, my childhood in Nigeria was not very bad apart from frequent abdominal pains, headaches and malaria bouts.
But after having 3 children, in 2006 it started in full force....full body pains, from shoulders to my legs, migraines, lower back pain and general fatigue.
In 2011, I took my children to Ireland on a visit boarded a plane. ( Aerlingus or Ryanair)
The next morning, on waking up, I couldn’t move my legs or arms.....
From other people’s experiences, this could be related to the pressurised cabin air and high altitude, but you ignorantly call this a hypothesis!
Since then, the rest is history, I can’t remember the last time I feel healthy or normal again.
I have done series of blood tests/works, X-rays and MRI all to no avail....
Nothing seems to be wrong with me they said, nothing is found from the series of these tests.
I am tired and I cry almost everyday, my children take turns to rub my legs and cry with me.
I am on daily drugs and supplements and do what I can do to cope with this pains almost every single day of my life.
But you have the audacity to tell me and others just because you have SCT and you don’t experience symptoms and pain like us, then SCT has got nothing to do with our wellbeing...... you are NUTS!