SCT CAN BE ALMOST AS BAD AS SCD..... SCT IS ALSO A DISEASE!

[Lizzylad12]

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It is annoying and painful that the doctors and the Sickle Cell Society will not do new research other than the outdated results they have regarding SC .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!

[jo19]

Hi lizzy welcome to the forum. I am sorry to hear about your experience. Although as someone with the disease, I wish I was SCT. Trust me when I say that having SCT is far better than SCD. Now a lot of us who have SCD have always been surrounded by SCT like parents, siblings and extended family. I know that all the SCT in my family have never complained about pain once but I strongly believe that that it depends on the percentage of sickle cells in a person with SCT that can contribute to pain episodes and anaemia. I also believe the cold and damp weather doesnt help. Like you I am from Nigeria. I have 3 kids and two of them sometimes complain about chest pain. I have a sister in Nigeria who also has SCD with 3 children. None of them have ever complained about pain. I am sorry about your experience. The problem is that because you are trait, getting stronger painkillers will be more difficult than us with the disease. You are not going crazy and the Nigerian pharmacist doesn't know either. Its not just Nigeria but almost everywhere you go, the trait is believed to not be a problem. I hope you find the help you need. Good luck.

[poochee]

I known how you feel I am 69 now when I was younger my Mom, would take me to the Dr. all he said was keep me out the sun, it seem to be worst in the summer, and cold months have Alpha Sickle Cell Thalassemia, it is very painful at times rain also make me hurt, you are absolutely right there is not enough research on the different types of SCT and SCD

[bernie1967]

Hi there u need a hospital appointment if u are living in London go online and look up centre middlesex hospital London that deals with sickle cell and go and register at a GP surgery if u at one change your GP go online and put sickle cell- nhs and u get a list pick sickle cell disease-nhs