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What Becomes Of Ss Genotype?

Hello Docs.

I just want to know what becomes of someone who has SS genotype in all aspects of life especially work, recreation, relationship and all that makes people happy. I have seen them go through pain that one won't believe they can get up and move around. What special thing can be done for them or what drugs can help them.

Docs in the house can pls post replies.

Thanks

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32 answers

Binta,

Yes I agree HYDROXYUREA is one of those drugs you could use, its just that we've noticed some patients experiencing an increased frequency in painful episodes while on the drug. This is common with mostly SC genotype.

It works for some but others tend to exhibit a refractory response to it, as most hematologists here have found.

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@czario

Im nt a Uk freak, like others are. Theres no big deal abt the place or their ppl or their healthcare for that matter. Still, the care far exceeds that of what obtains here at home.

From my own observation while in the UK you are correct abt the long waits of those in painful crises before pain relief (usually morphine) is administered.

The reason for this is because NIGERIANS ABUSE THE SYSTEM. On very busy nights, especially in some borroughs, hospital A andE

Can get flooded with lots of 'blacks' claiming to be in painful crises. Once these supposed SS patients get a morphine jab they immediately resist admission then abscond.

It turned out that most of these were NIGERIAN HEROINE ADDICTS looking for a free 'hit'. This is wat used to happen previously in some areas around centres like the royal london in east london where you can have a high density of nigerians.

After this a&e policy changed. So new patients were made to wait until some one could take a comprehensive history. If the place is very busy it could take more than a half hour waiting but not quite an hour.

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MCLOVIN

So u too are one of those that believe UK offers the best of this best of that. But how do u explain a family friend of mine who came into a London A&E with crises pains and wasnt treated or seen by anyone for almost an hour until she passed out frm the pain.

Shes still alive but I think that kind of treatment is rather shabby for a devlped place like Uk.

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@ chip,

sorry for the loss.

it's not easy to manage though xcept for divine intervention that's why i couldn't skl outside lagos.

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happy for you gee. Some live thru it. ss cases differ. Some are mild while others are very serious. Maybe you have a mild one. Hurts that i lost three of my siblings to those genes.

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Gee, the problem isnt your bones, its your joints and muscle mass. You shouldnt be attempting hand stands, youre inviting trouble for yourself.

Increase your muscle bulk before thinking of stunts.

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only God knows what she was thinking.

@ mclovin, bluediva and others,

why is it that ss patients usually don't have strong bones 'cos i can't stand long on my hands when doing stunts. (dance matters)

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I think its a shame that someone

(T boz) with all the fame, fortune and access to standard healthcare couldnt bother to at least have had some genetic counselling. Now she's passed her problem on to the next generation.

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That's really cool, she believed she can and she did which means medical judgement isn't final we still have someone who can prove medical judgement wrong. I pray the baby lives long enough.

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I have a special interest in SS issues.

Have someone close to me with the disorder.

From what i've read, having children is a tough decision for SS women.

One has to have the best care from experts to stand a chance of a safe delivery.

Even US based R&B singer, "T Boz" of the TLC fame, was advised not to have a child because she is SS.

Thankfully, she proved doctors wrong by safely giving birth to her daughter, who sadly has the SS genotype like her mother.

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Seal

Though pregnancy in SCD frought with a high likelyhood of complications, i know MANY SS women with 2,3 even 4 childeren. What they really require is specialist management by an experienced OB/GYN (Obstetrician) in the antenatal period. Since she's in the UK shes sure to get the best care NHS can provide.

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@MCLOVIN,

i have been and still trying to make her see reasons, hope she hears me out.

Can anybody explain the chances of survival child birth and the risk involved for an SS patient.

Need the infoes for my friend as well.

i will be very glad if any female SS patient who has children can share her experience with the house.

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@seal777

Sori, my bad. I got your penultimate post the wrong way around. Your frnd who is SS shld av a little more positive attitude abt herself especially now she has someone who truly wants to marry her. The guy in questn isnt ignorant of her condition, so he knows and has made a decision to be with your frnd inspite of it.

I think u should encourage her to go for it as there are NOT many ppl out there as bold as this man who can marry SS.

Thats what  i shld have said.

Cheers.

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The problem about the lady is that she hardly goes out, always in doors and close to her self, no friends except her laptop, phone, work and her bed, quite strange though as she always say negative things about her self.

Sometimes she will be the best friend to have around and the next minute she is so irritating and harsh to be with but will later call to say sorry after all for her actions.

@MCLOVIN ,

i dont seem to understand what you mean, can u explain further?.

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@ bluediva,

amen. thanks for that and you got it right on point. mingling and doing things like every other person takes ones mind off the issue.

thanks once again.

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Enlightenment is key here.

Educated and enlightened parents usually have relatively healthy SS kids.

Immunization, good diet, vitamin supplements all help in shaping the growing SS kid.

Lack of this leads to stunted growth, some SS in their late 20's look like 12 yrs old.

Please, keep enlightening parents that SS ain't a death sentence.

I know a SS guy who refuses to believe he is SS. Does everything like the average person. 

Now in his early 30's, has a couple of degrees, dated a lot of girls, works, does everything and he said he visited the hospital last 5yrs ago.

I guess the secret is study yourself and have faith in God.

Best luck to you gee., God will keep you strong and you'll live very long !!!

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@seal, i would suggest your friend looks for someone else cos she so believed she gonn die at her tender age and its only God that can reverse that. meself had prayed a final prayer before but God kept me from death so all has to do with her mind, belief, thought etc but help tell her that she is a normal human and she should live like one and take her mind off genotype qualms cos the devil wants her captured with that. thanks.

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@seal777

That says a lot abt ur friend. As for the guy, he shld go do thanxgiving in church.

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Thanks so much, really appreciate that.

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yep,

pls search for me 0n FB

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Wow ! Are in your 20s yet?

Dnt worry, they tell me once you make it 30 you'll have less problems. After that just look after your appearance,keep your weight up and protect your fertilty. Find a nice genotype AA girl to marry. Youll be fine.

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@ mclovin,

I am also a victim but God has been keeping me ever since my childhood though I don't fall sick often it's rare before I break down and really I hate drugs but me aint gat no option and doc will always tell me that if I don't take drugs I'm gonna die though ,I've been close to death before but I give God thanks that I'm still live.

This ma mail addy geegbenga@yahoo.com or 2348027664708 n 2348062993223.

Thanks.

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@ gee

You seem to know them quite well. They absolutely hate poorly ventilated and hot environments.

Your friend could try bone marrow transplant if he has the resources, its better done while he's younger not older because the success rate is higher in the young.

Have a nice day.

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where ma friend mclovin @?

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My friend want to marry an SS but she wouldnt accept their relationship to lead to marriage, she said she is refusing his his proposal for marriage out of pity for him cos she knows the marraige will not last and that she doesnt want to take him through a horrifying experience.

She is 26+, schooling and working in the UK.

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@ alldone

sure, that's the best since majority have been enlightened. thanks

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it is only God that can help, however make sure you do genotype text before marriege. regards

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Its just the grace of God that keeps any sickler strong enough to do anything because they hate stuffy environment which Naija has enough of and stress which you can't do without if you need anything in Naija and it's not possible for them to remain indoors though it's a disorder but it doesn't make them useless as a matter of fact, all SS patients i have known are very brilliant and can do anything profitable cos they channel their strength to those things.

I keep praying God changes the genotype thru miracle or keep all alive for a good number of years which a human shuld live and even above.

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Sorry to hear abt your loss. I too have lost quite a few friends, classmate and a sibling 15yrs ago to this.

The most serious threat to the life of the sickler is Acute Chest Syndrome. Even abroad the mortality rate is quite high but in our part of the world its more or less 100%.

Dying of ACS is like 'having your lungs crushed slowly' . Abroad they are placed on assisted ventilation, antibiotics and most importantly given Exchange Blood Transfusion.

Here in Nigeria, there is over-emphasis on  giving oxygen to them rarely anyone bothers to arrange for an exchange tranfusion early enough, so these patients most of whom come in with pulmonary oedema , eventualy tire out, pass out and check-out. The only thing you can do to decrease possibilty of ACS occuring is to aggressively treat any chest infections in the EARLY stage. This does not eliminate the possibility totally, as other factors can also lead to it. 

Typhoid (salmonella) osteomyelitis is also another big killer for sicklers, so make sure your friend is up to date on his immunisations.

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@ mclovin,

thanks, i have met people who do advise that one should take his/her mind off the situation. really, i lost 2 friends while in sec. sch one in jss1 a girl i love hanging out with and the other a guy who died months after our ssce but i keep praying the 3rd stays alive. its actually not interesting see them writhe in pain. thanks again.

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Managing Sickle cell disorder can be a nightmare for both patient and care providers. Theres no textbook protocol for keeping a sickler healthy. What works for one may not necessarily work another.

The basics are keep warm, stay well hydrated, avoid physically strenous activity but take enough exercise.

Fatty foods do not seem to help so avoid. Supplements like folic acid and B complex and zinc are helpful. Make sure he/she gets vaccinated against pneumococcus and other possible infections.

Theres also NICOSAN a new drug that is supposed to prevent or decrease incidence of painful episodes, you might want to try that as well.

Some sicklers can live long as anyone else, i met a 73 yr old woman who is also SS recently. So it is possible. there are many who are already in their 50s married with kids so have a positive outlook.

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