neolboy:




It's a painful experience, I lost a friend January this year due to the sickness ss. u can only pray to God or her blood is drained out of the bone marrow and new blood of other genotype is been transfused into her system. Anything apart from that it's only God that can sustain her till only God himself knows when. God will help you

there is a permanent cure bro, that of the medical is expensive and risky but the trado-medical is cheap and highy effective

Don't worry she will be fine. All of people have given you nice suggestions.
One, she needs to have an in-depth knowledge about her condition, what brings about crisis and try to do away with them.
Secondly, she should know her blood level baseline (pcv).
She should always keep warm, drink alot of fluid, use insecticide treated mosquito net, take prophylaxis for malaria, folates, eat healthy, I believe with all these and other advices given, her crisis occurrences will drop. Thanks

Let me have your number If you are on whatsapp. Meanwhile,get fresh ugu leave squeeze it with little clean water. Add milk and honey(if available) to the resultant juice,let her drink it.atleast Twice a day for 3days or more.

underlying infections atimes result in malaria attacks and prolonged bt seemingly ineffective treatment. A good broadspectrum intravenous/oral antibiotic should be included in the treatment regime.

Encourage her to take a lot of fluids,including pap/custard,oaths,vegatables,beans,fish and fruits. No exposure to cold.

NB:I am neither a medical or herbal practitioner but I know what it means to be a SS warrior and survivalist.

WebSurfer:
Please i need help on suggestions on how to cope with my sister who happened to be an SS, shes almost 17 now but this frequent illness and blood shortages have always come up from time to time always leaving us in fear due to the height of pains and sorrows my sister pass through each time.

recently, she got down with malaria again, the doctor always prescribes drugs and all that whenever this happens but recently, she's complaining they are not working.

Please help with suggestions because we are really confused on what to do and cannot become ignorant.

We can't afford to loose such a rare gem and the brightest brain in our family.

a lesson to ppl dating,make sure you ascertain ur partners genotype before before fu..cling unprotected.go for tests don't depend on heresay. a trad marriage we went this January has hit the rocks cos of this issue,guy just entered once girl became pregnant.asked her she said she has always been AA and marriage came up.Church recommends test against upcoming white wedding which showed both to be AS.my guy says he's not marrying again,says he doesn't have strength to tend to a sickly person for life.

the ugu juice i mentioned is good for blood,also Astymin(not ASTYFER) or any other non iron based multivitamins.

WebSurfer:


Thank you for this post but in question of blood tonic, how does she cope with the blood loss or decrease almost everytime this illness comes up

Sorry Bro. You need to be strong about it.

She should take plenty of water, vegetables, fruits, ice fish.

Also suplements such as tablet of folic acid daily. Cellod -S tablet daily, then Ciklavite syrup (very good 4 quick blood buildup)...

She should avoid stress and extreme temperatures (cold or hot)...

[quote author=eodavids post=55605290][/quote]
Thanks man...I am a doc, by Gods grace

How can you seek such solution here?please kindly look for an haematogist,whose specialty is to manage this.NOT ALL DOCTOR ARE SPECIALIST. AND NOT ALL SPECIALIST ARE HAEMATOLIGIST.
The worst complications of this pathology is not the pain,it ranges from stroke to organ damage especially kidney failure, which could result from indiscriminate use of herbal preparation and ineffectiveness treatment of crisis.
Depending on ur location,I will suggest some places,if you have challenges, let me know.
1)Lagos----Sickle cell foundation centre,directly opposite LUTH,idi Araba.
2)LASUTH haematology department, Ikeja
3)Ogun state---FMC Abeokuta,OOUTH,Ago iwoye
4)Babcock university teaching Hosp.

Am 100% sure you can get a qualified hematologist in all this places.
If you want direct contact of any of them,kindly let me know.
Please he/she needs wholesome evaluation and not symptomatic treatment.

MrsAnyanwu:
i hate rubbish like this, is this the answer to the question he asked, someone needs help and you are talking trash, rubbish

Madam please i am not the cause of your frustration, look for your husband and attack him.

Very correct, she shud be taken paludrin in addition to folic acid and Bco. She shud avoid strenous assignment and she shud take multivitamin like Astymin (avoid blood tonic wt Iron). If she can be sleeping under mosquito net and avoid exposing urself to cold, avoid entering rain and if there is cold, take bath with warm water. Eat light food as dinner. All these are in addition to wat he mentioned above. Epele Eku itoju

holarcarny:
take these proscription it mighty help you.
1) she should make sure she drink plenty of water under normal circumstances she most take at least 5litters or more than of water everyday.
2) she must less take of anything inform of carbohydrates I.e anything made from cassava ( gari, bread, etc) corn ( semo because of preservative)
3) she must always eat vegetables regularly most especially ugu at least every week .
4) she must avoid any drugs that contains iron most especially blood tonic she should stay from it.
5) she should always takes folic acid and vitamin B complex including Reludrin everyday every evert important.
*** there are some other information I won't be able to pass here ****
if you need more information send me private message I will reply .

Astymin is good for her and she can be taken Ugwu vegetable atleast twice in a week. She wil survives it isiallahu

WebSurfer:


Thank you for this post but in question of blood tonic, how does she cope with the blood loss or decrease almost everytime this illness comes up

mayordy:
SS patient is down with malaria... Bro are u sure u know what ure saying at all

...i kinda had d same thought.....nt sure anywayz

WebSurfer:
Please i need help on suggestions on how to cope with my sister who happened to be an SS, shes almost 17 now but this frequent illness and blood shortages have always come up from time to time always leaving us in fear due to the height of pains and sorrows my sister pass through each time.

recently, she got down with malaria again, the doctor always prescribes drugs and all that whenever this happens but recently, she's complaining they are not working.

Please help with suggestions because we are really confused on what to do and cannot become ignorant.

We can't afford to loose such a rare gem and the brightest brain in our family.

Dear poster, sorry for your sister's condition.
But sorry to say, I am a bit confused. You said she's almost 17, that's great. It means you must have been taking care of her and observing some medical and health routine for her all the while. Cause I know how it cannot be possible to reach that age without such care.

Well to answer your question, first, you don't just depend on suggestions gotten on forums such as this wholly, no its risky. It is just like depending wholly on Google results for some medical conditions. Each patients or human being is peculiar you know.

Your sister must have a consultant physician, must. You can't say you don't have money, government hospitals are there, she must have a hospital close-by that is familiar with her case, that knows her special condition etc and must always go for 'check ups' at least once a month or two months even when she is well.

Now from experience(my sister is one too),
1.water is their life, she must always be hydrated, (read up on Google to know the reason behind this)


2 .Covering up, I mean like covering herself during cold, wearing thick clothings even during the day, I believe cold triggers crises.

3. Preventive malaria pills like paludrine must be taken daily

4. Folic acid is also taken daily

5. Pain killers, (not paracetamol o, lol. My sister takes Diclofenac) Always have this at home too. Anytime she starts having pains mostly in the limbs and joints (this is the particular reason she must always take much water, so those sickled cells don't get stucked; read more, wish I can write more) and most times at home, pains always signifies beginning of crises.

6.Please no blood tonic oo, or any drug or medication that contains 'IRON' they already have enough hemoglobin, yo don't wanna increase that and get her more sickle red cells (read up on Google for reasons behind this too)

If she can avoid crises as much as she can, the better, look out for the things that triggers crises, in most cases, Infections, malaria, dehydration and stress. avoid it.

She can eat all that human beings eat, infact let her eat well, it helps a lot.

In our case, most times, if not all the time, she is admitted, she always get blood transfusion. (she is vampire like that, always drinking blood, lol, )

Don't be weary, don't lose hope, she isn't dying, don't be surprised she will even out live most normal people around her. I ve seen 70,80yr Olds pure sicklers.

Sickle cell is not a that evil or that much terminal disease so to say, it is a medical condition, that needs just utmost care and support and yes money, shikina, she can do everything every normal human being does, build a career, marry, raise a family, do everything, just a little caution here and there and she's cool for life. (I used to have a colleague that was one also, she has a very sweet family already,handsome husband, pretty kids, wow)

Now there is a cure, I think Stem cell, and some other drugs. And yes. Prayer. I am really marveled at things my sister could handle, very strong somebody, and it couldn't have been anything but God's grace and might. The kind prayer my mama dey fire for her head all the time pretty much works.

All the best.

holarcarny:
take these proscription it mighty help you.
1) she should make sure she drink plenty of water under normal circumstances she most take at least 5litters or more than of water everyday.
2) she must less take of anything inform of carbohydrates I.e anything made from cassava ( gari, bread, etc) corn ( semo because of preservative)
3) she must always eat vegetables regularly most especially ugu at least every week .
4) she must avoid any drugs that contains iron most especially blood tonic she should stay from it.
5) she should always takes folic acid and vitamin B complex including Reludrin everyday every evert important.
*** there are some other information I won't be able to pass here ****
if you need more information send me private message I will reply .

she should also eat an egg a day
Whenever she is having malaria, she should treat with coartem + ibuprofen + cenfuroxim
She should also be taking ciklavit regularly

All these prescription are given to me @ oouth for my son (ss patient)

I am an SS patient n 36yrs old now n has never changed blood. l only topped blood last year 4 d 1st time becos l went 4 a leg surgery. God has bin faithful to me....but so many measure r bin taken by me2 ensure l do not even experience crises in d 1st place. Since eviction of crises is almost impossible 4 SS patients, l experience mild crises maybe 3-4 times in a year. N d best part of it is dat u can never tel l am an SS patient except u r told. Plz contact me on 07087682140....it will give me a gr8 joy 2 counsel her n make gr8 +ve impact in her life.
N.B: reduceingd number of times she encounter crises, is d key 2 her sound health n l av tips n guide lines 2 give her in respect 2 dat. Has she experienced LEG ULCER yet? Plz contact me on d above number 2 speak wit her n counsel, no fee is attached. Nothing gives me joy than contributing +vely in someones life.
Plz all l want 2 do is speak wit her everytime 2 encourage her dat she is not alone on dis health issue n dat she shud draw courage frm me. Plz give me a chance 2 impact in someones live positvely.

Good morning op. Will strongly suggest she register with the hematology clinic in any of the teaching hospitals around you. Such as lasuth in Ikeja, Luth at mushin. The follow up clinic entails a regular check up at no cost with specialist of interest. Have spent my last 2yrs managing sickles cell and cancer children. The pain is really killing and money draining. Better u use the teaching hospitals cos they have the hematologist.
On daily basis I still get consult to inform parents about the status of their children as SS.
Pls house.. If for any reason u are to do genotype test kindly do it at a reputable laboratory. At least a lab. U can sue.
Each day have had to battle with parents who think they are AA but unknowly are AS due to faulty laboratory results.

WebSurfer:

Thank you. Are these mainly for the purposes of Sickle cell patients or

Yes, all except esomoron which is mainly an immune booster.

WebSurfer:


Thank you for this post but in question of blood tonic, how does she cope with the blood loss or decrease almost everytime this illness comes up

@Websurfer like he said, avoid iron at all cost. I once had step siblings and it saved their lives there is I think it was astymin the doctors finally agreed for them to be taking. Also they don't eat brown beans because of the high level of iron it contains.it is healthier to get blood naturally than base on drugs. like mixing tin tomatoes and malt to drink, you can also do tin tomatoes and squeezed water from Ugu or you mix all three and get her to drink it, or there is devil beans also called touch and die, the leaf is also rich, you can squeeze too, meanwhile any leaf you squeeze steam for like a few minute on fire to kill germ so you don't fight another thing next. and be sure to Use moderation, too much of the blood could also be a problem. Go to a very good General hospital and consult a good doctor for advice. She will be fine. the main fight is to pass this stage once she passes like 20 something now she will be fine
may God protect her for us ijn
Because blood tonic could contain iron

@op I want to believe your sister is already on routine drugs like palodrin folic acid and b complex. If not you need to go to a reputable hospital or get a letter to any of the sickle cell clinics. She will be given routine drugs. I hear a lot of people saying it is wrong for you to come on this forum. I laugh cos there is power of information on forums like this. Let me put it precisely, there are many herbal options around which are highly effective but in most cases you will find out that only one will be perfect match for her. You need to do trial and error and once you get the one that works crises will be rare. Most popular are cellod s, solamin. I cannot readily remember the name of the third one. In fact some people have claimed permanent cure with solamin. Please I will advise you still use it alongside the Orthodox medications

SURElee:


Thanks dear for this. My auny has a sickler son and she said ugwu as a vegetble is out of it as told in the hospital since it has iron for blood production blah blah blah. OP please find out the vegetable suitable for your sister please. God be with her and heal her and give your family the grace to care for her.

natural iron is not an issue. Processed iron is the one with the issue

All is well. Apart from the medical advices given which I believe are okay,i'll like you to know there's a PERMANENT cure through the. Finished work of Christ on the cross. Many testimonies abound to this fact...hers won't be an exception In Jesus Name,Amen.

WebSurfer:

Thank you and God bless you all for taking your time to support with explanations

Welcome.

[b]Oh dear I'm so sorry to hear of the needless pain your younger sister is going through. I will not give you a number to call, I will recommend a solution here and now! This will be your final bus stop for sickle cell crises. I know this because some family members who now live a normal life since taking this solution.

The guaranteed solution is Dioscovite! because she is already facing crises, tell her to take 2 * 1ml of the suction measurement that comes with the dioscovite morning and night. She should mix it in a cup of normal water or a diluted cup of juice for taste. She should take 1 folic acid and 1 B complex 2hours after taking Dioscovite. She can reduce the dose to once a day as she begins to feel better. Extend my congratulations to her! Sickle cell is no longer a killer with this drug founded by an Igbo man based in the U.S also don't stop here, please google Dioscovite and you will forever be pleased you did. Don't thank me also, just give all the glory to ChiUkwuOkike.

If you are looking for where to buy the original Dioscovite, please message me and I will give you a source. I don't even mind paying for your first pack of the drug. I just feel so passionate towards those who suffer from this preventable disease as a result of family members who have suffered from this in the past before we discovered this miracle herbal remedy[/b]

WebSurfer:


Thank you for this post but in question of blood tonic, how does she cope with the blood loss or decrease almost everytime this illness comes up

the blood tonic is not for ss because it contains iron and this iron kills sickle cell red blood cell and damage the cell easily

WebSurfer:
Please i need help on suggestions on how to cope with my sister who happened to be an SS, shes almost 17 now but this frequent illness and blood shortages have always come up from time to time always leaving us in fear due to the height of pains and sorrows my sister pass through each time.

recently, she got down with malaria again, the doctor always prescribes drugs and all that whenever this happens but recently, she's complaining they are not working.

Please help with suggestions because we are really confused on what to do and cannot become ignorant.

We can't afford to loose such a rare gem and the brightest brain in our family.

My brother/sis, I feel ur pain and know it's really tough as I myself is an ss carrier, one thing you should know is life belongs to God and even the "weakest" are far stronger.

LOVE her and let her know you love her, we love it when we know there is that person who really cares about us one that can cuddle us even when in pain, one that shares the pain with us. remember life is but for a moment.

I've tried to read people's comment truth is some of the drugs are selective (they don't work for all sickle cell) personally I've tried celloid s, nicosan and right now I use jobelyn. the first 2 worker well until I couldn't find them in market again then someone introduced me to Jobelyn which God has been using to help me along with astymin blood tonic.

please note most doctors do not officially prescribe these drugs except for astymin (don't know the reason sha) so help her and yourself by interacting with people with same genotype these drugs ain't so expensive and they are effective.


Modified
those of u saying he should contact you are heartless why should he contact you privately when u can as well drop all the info here so others can read and learn.

I once had a crisis and admitted for about 10days and yet even upon discharge from the hospital it was as if there was no relief I complained bitterly to the doctors and my dad but then a family friend brought ciklavit (don't know if d spelling is right) tonic for me and same day I started feeling relief.

I pray u find the right one soon and she get well soon

WebSurfer:


We can't afford to loose such a rare gem and the brightest brain in our family.

sorry abt that. This line was so touchy. I feel for her.
If u are anywhere around PH, there a well refined ( homeopatic) drug/herb that will do wonders to dat. But its a bit costly.
A trial will convince u.
Pm me if interestd. Gudluck to her.

What's all these about hydroxyurea and "not self Medicating”?
Websurfer, before you give any drug to your Sib, just google and have enough information about it. OK.
Hydroxyurea does more harm than good to SCDs. It kill cells!
Water, folic acid, paludrin, hygiene and the rest will only gentle your sibling's passing ( God forbid). They are still necessary though.
If you are in Nigeria, I will only advise you to order for one or two of the drugs I wrote about. They are the only hope you Have, apart from God.
They work. And your Sib can live a normal life.
You don't have to live with the pains of SCD, it can be effectively managed.
*** solamin, cellod-s are herbal drugs ( though cellod-s is in capsules), most doctors will not prescribe nor recommend them for you.

Warrior07:

*** solamin, cellod-s are herbal drugs ( though cellod-s is in capsules), most doctors will not prescribe nor recommend them for you.

you're right most doctors don't recommend them, but what could be the reason for such? I agree they don't work for all patient but I still believe they should recommend them anyway

Buy supplements, thank me latter.
Also, go to people selling agbo, ask for 'Orin ata', peel the back, soak it and drink a cup every morning. My uncle in US don't run out of it.
I have them all around me, a brother, an uncle, two aunties and two cousins. am talking from experience.

[

Buy supplements, thank me latter.
Also, go to people selling agbo, ask for 'Orin ata', peel the back, soak it and drink a cup every morning. My uncle in US don't run out of it.
I have them all around me, a brother, an uncle, two aunties and two cousins. am talking from experience.

WebSurfer:
Please i need help on suggestions on how to cope with my sister who happened to be an SS, shes almost 17 now but this frequent illness and blood shortages have always come up from time to time always leaving us in fear due to the height of pains and sorrows my sister pass through each time.

recently, she got down with malaria again, the doctor always prescribes drugs and all that whenever this happens but recently, she's complaining they are not working.

Please help with suggestions because we are really confused on what to do and cannot become ignorant.

We can't afford to loose such a rare gem and the brightest brain in our family.

Tolupage:



you're right most doctors don't recommend them, but what could be the reason for such? I agree they don't work for all patient but I still believe they should recommend them anyway

Its against the ethics to prescribe drugs that have not been scientifically proven and accepted within the medical world.