My brother I know your pain and I'm glad to let you know that I have a syrup I have been giving my daughter and she has not experienced crisis since we have been giving her the syrup. Contact me

Yemike:
I
need people with experience on how to manage SS Crisis.
Both my parent are AS and we the kids are 5. I'm the first child and I'm lucky to be AA, the 2nd born AS, 3rd, 4th, 5th - SS.
I have 3 SS siblings and right now most of their responsibility and wellbeing is on me as the first born cuz my P-man is old already.
Just last week I have to rush down to my brother's school to bring him home cuz he called me in the middle of the night weeping cuz the pain is just too much and his roommate isn't around.
My question now is how can it be managed? cuz it's really affecting everybody cuz It's affecting their studies, I'm exhausted right now cuz anytime it happens it's ends with me borrowing funds to send to them and lastly it's sucks happiness out of the atmosphere as hearing a teenager weeping and knowing you can't do anything about it is saddening.

I've seen some people asking if they as AS can also marry AS please and please don't try it as you'll just be bringing innocent kids here just to suffer. The trauma of you seeing your kids in pain sef no be here.

How can SS Crisis be avoided/managed?

I'd have loved my write up to be well detailed but the little I wrote up there took up to an hour cuz my phone is bad.

You experience and advice will be well appreciated. Thanks.

fastseo:


I ask again did you parents conduct genotype?
If they did then they must be enlightened or well exposed.
Don't you know that in the past most especially 80s downward people hardly test for stuff like this as majority of Nigeria where in rural area with little or no information about genotype, again with little or no formal education

Referring to them as wicked is unnecessary as they don't know anything of such.

Even till today.go back to your village you discover that some are not well informed on genotype.

It was even in my secondary school I began to understand what sickle cell is all about and did my first test on that in 100 level which was a requirement from the University.

So imagine if I am not educated up to the point of secondary school. What would have happened?



Even now science is now breaking boundaries with such.. Making it possible for those with AS /As to get married. But the process is expensive and most effectively in developed world.

My mum and dad got married in 1993 they did Genotype. So where's the excuse for the op?

descarado:

Depending on their church. As far back as early 80s, the Catholic church will not wed you. You must bring lab result. I think they still do it.

Are you sure about this? Even now? That catholic will not wed them? Or they will certainly demand for the genotype?

Acidosis:


An emotional dingba.t like you is more concerned about preserving the integrity of a wicked parent than the pains and crisis of three helpless SS adolescents.

Shame on your coconut head.

Shame on you and your stupidity.
Senseless moro.n

Omo forget live no easy living with this shit is very scary sickle cell is more than a disease
Sickle cell crisis
Emotional crisis
Financial crisis
Stigmatization
Buying drugs continuously is another thing
Healthy people still dey find it hard to get job how about sicklers
The said there's a cure but it's very expressive
Another treatment has been approved but where do you get 1m$ for the treatment
Sometimes it's really exhausting
Life sucks i just feel cheated in life
Make we no even talk about the crisis

Chee59:

Do all this. Your next crisis will wake you up by 2:30am.

you don't know anything yet you keep quoting people up and down

So annoying!

Abbeytoy:
We have 7 sickle cell in my family.

it is well

I hope they are fine tho

Tito24:
it is well

I hope they are fine tho

Only one remain. I pray God protect him.

I am sorry for your experience, OP. Sickle cell disease is a disease that no parent should ever allow love and ignorant be a reason to give birth to a child with the disease.

I am a sickle cell person, and I can tell you that life has dealt with me, and I've had a share of painful moments. Moments I kept closely to my heart that i can never forget till eternity.

Usually Sickle cell disease (SCD) comes with a unique form of engagement for every patient and the triggers are also unique.

But let your siblings try some of the following preventive measure to aid in the daily affairs of their life:

1. Let him sleep freely not to congest and stress the muscle/joint of the hands and legs,
2. Drink alot of good water daily to stay hydrated
3. Stay clare of colds
4. Use his daily and weekly drugs (folic accid, Palludrin)
5. Eat balanced diet
6. Avoid shortage of blood especially mosquito bites and copping
7. Avoid excessive stress
And lots more

Abbeytoy:


Only one remain. I pray God protect him.

oh so sorry
I hope he is ok
Please take care of him

I have a daughter who has SS

Well.. God healed mine completely.

Hemoglobin C is stronger than S, it is next to A. AC + AS can give birth to SC which the person I quoted was referring to, there's also CC, the most rare genotype as at now. Some SC might look physically frail but they are usually more healthy.

You would hardly know about their genotype if you were not told. I would have shared links but nairaland is not friendly with links, the mods can delete 'em even before you get this reply. You can read it up on your own.

Emma513:
WHAT IS SC AND SS, I THOUGHT ALL ARE SICKLE CELL

Tito24:
Oh so sorry
I hope he is ok
Please take care of him

I have a daughter who has SS

I am Okay and doing fine at 40 plus.

xavuv:
Pain killers, folic acid every now and then, cancel all mosquitoes in that area , balanced diet, little stress and enough rest.

Plus ready on demand emergency fund just incase.

These are from my experience when i lived with someone having SS.

As a health professional I'll say

Malaria is the least concern of people with sickle cell

They're almost immune to it

1Sharon:

I wouldn't say wicked, just ignorant.

Ignorant is 1 or maybe 2 but 3... come on!

Regex:


My mum and dad got married in 1993 they did Genotype. So where's the excuse for the op?

1993 that's why I said most 1980s. Hope u read where he said his parents are aged ... Mine got married 1978 they never did. Majority of marriages held in the villages, even in small towns hardly do check genotype.

Abbeytoy:


I am Okay and doing fine at 40 plus.

oh wow!!!

The lord is your strength

Abbeytoy:
Take him to a general hospital where they have enough Haematologists and make him join some sickle cell forum for better understanding.

Always stay hydrated, avoid mosquito bites, avoid colds, and eat well(not junk) take folic acid, Bco and Palludrin daily. Get tested if they can use Hydroxyurea, it helps, avoid excessive stress.

UCH Ibadan is the only hospital in Nigeria with a better understanding haematologists.

You can contact DM for more assistant

What's the name of this font Bros?

remzytimer:
You can only try your best buy only my God can turn SS to AA let your faith be strong in God. Tell them to attend Shiloh 2023n the God of Shiloh is special in impossibilities. Just come with faith

will you stop spewing trash for furk sake.

Tito24:
you don't know anything yet you keep quoting people up and down

So annoying!

Aturu.

ahnie:
Touching!
We're both AA's

Dear poster, I understand how you feel...

It isn't easy to care for one person living with sickle cell... Caring for three people living with sickle cell disease is so draining.

As a person living with sickle cell and a health personnel, I have been able to find ways to thrive and stay health (my blood levels are quite up now from 27% to 32% and can't remember the last time I was hospitalized).

Here are the things to focus on to help curb the issues that come with sickle cell.

- Healthy diet: Since anaemia is one thing that sickle cell patients face, the diet should be channeled to help boost blood levels and boost immunity (I can help create a specialized meal plan that has helped me too)

- know your triggers and avoid them as much as possible. Such triggers are

a) Stress or strenuous activity.
b) Extreme weather (too hot or cold)
c) Not having proper sleep.

- Stay hydrated as much as possible as possible, this can provide lubrication to joints and take more oxygen to the bloodstream to avoid pains

- Stay away from things that trigger low-energy such as caffeine, and energy drinks because they contain caffeine too

- Light exercises should be carried out to encourage proper blood flow.

- Take supplements and medications, I understand that supplements especially the stem cells are very cost and not so affordable.
There are alternatives that aren't cash consuming that I have been using for years and can share if anyone reaches out.

- Join support groups, to help get information on new improved ways to care for yourself and also to share your experience with others facing challenges like you.

I hope this helps.

If you want meal plans for sickle cell, supplement recommendations and want to join a reliable support group reach out to me on Whatsapp 09154113087

EmekaBlue:
Miracle no dey tire Jesus

Mine was AS as I heard but I did again recently I saw AA

you people should stop being stewpeed for Bleep sake

Chee59:

Aturu.

wey you be

fastseo:


Ask your mom n dad if they did genotype test before marrying. And they should be in their 60s.

In the 70s, 80s and even early 90s most of us don't know what genotype is. Where is the lab to run this test as you can find today. If exist will be expensive.

Even now.. Go to remote villages, they still don't know what genotype is.. We are lucky to have this level of education n leave in city

Don't mind him jawe.. Let's not even talk about our parents and grandparents, let's bring it down to our own generation

Even in this era where people have access to information and the latest technology, there are still a lot of educated people that wallow in ignorance

Even in this our generation, there are still educated people that foolishly marry someone they're not medically compatible with how much more in the 50s, 60s or 70s

Tito24:
oh wow!!!

The lord is your strength

All the time

ebukaka12:


What's the name of this font Bros?

✅

They should never stay alone.

Acidosis:


Your parents are very wicked.

Because of their selfish love. They should have stopped at 1 that happened to be AA

Primebuilders:
Plz be informed that there is now cure for sickle cell. Many don't know contact me I will show you to a doctor that dies it. I am talking of cure and not bone marrow transplant

Fùckèn liar

Tito24:
oh so sorry
I hope he is ok
Please take care of him

I have a daughter who has SS

And yet you're talking like a fòòl.
What an irony.
You should have been the one with sickle cell.
Because you seem to how it feels more than myself who lives with it.
Anumanu.

Chee59:

And yet you're talking like a fòòl.
What an irony.
You should have been the one with sickle cell.
Because you seem to how it feels more than myself who lives with it.
Anumanu.

you see how smart you are

Read what you typed again

Na why una no fit ever get sense

Eleríbu somebody

Go and read the rest of my comments

You find the one that really applies to your stupldity

Caseless:
You heard him saying his parents are old - no one does that genotype test in those days. We were just lucky.

I'm referring to management of the case.
Or has the Op never followed the patient to the hospital?