i know you have been in a relationship for a long time. but remember that LOVE can also be found with someone else.
If you two decide to get married, then you should think of only adopting kids. there are loads of kids on the earth that need help.
Risking a child being SS is just a matter of selfishness. the child will be the one who will suffer and he or she might end of resenting you two for it.

really think about it before you decide to take the plunge.

@ Poster, i guess the otehr nairalanders have said it in their different languages.so its up to u, i'll suggest u save the future unborn, forget about self here, it happend to me, and i had to take a decision taht hurt me at taht time, but i feel happier now, cos i am no more ignorant of taht Gene fact

i don't have any info on any medical breakthroughs but i can tell you that it's not worth the trouble. split up and have one less thing to worry about. no amount of love can take away the pain of watching your kids suffer.

hello i would really want u to visit a doctor.
sickle cell disease is an infection from both parents to the unborn child,now u guys re  saying i love u,but when u start having babies dat word might change to i wish i knew i shouldnt have done it.and quarrels starts pilling up from no where.
please ,do take our advices,it is for your own good,last year i had to leave my boyfriend we found out we were carriers so am talking from experience.
all u guys need to do is to sit  down   and  have a heart to heart conversation,u both need to carry on with ur lives,men sickle cell experiences  is a night mare,the chances of the child staying alive is  very slim,an uncle lost three of his kids to the illness,are u ready for an ever lasting challenge,any slight mistake can cause DEATH in d home.please i beg u in d name of God dont get married becos of blinded love but get married becos u want healthy children.lets join hands together to eliminate the disease out of africa,and out of nigeria.
thakn u and have a re-think

Let love not blind the two of u into selfish actions.
I can tell u first hand what being an SS is about because I am also involved with a girl who is SS. But in my case, thank God I am AA. Ur children will go thru extreme pains and even death in some cases. Its not the pain of someone having a headache my friend. Its pain beyond comprehension. Sometimes ur voice alone can trigger unexplainable pains when their crises hit them.
That u now know she is AS and u are AS, my best advise and still the best is for the two of u to end the relationship knowing for sure what the future holds for u two. Someone suggested adopting kids. Well its easy to find such excuses because u think u are in love. Well for how long would u be comfortable knowing u can produce your own kids and just can't because u child might die and not because you are impotent?
Some people also said u should believe in miracles. Why do people like sacrifice better than obedience? To be frank with u, there is love out there for u and ur girlfriend. Remember, you dont find love in a relationship, you bring it in.
I wish u the very best in your future endeavours.

@ poster

u've got to let go man. don't marry her. don't do it man, don't do it.

but if u must, why dont u research on atrificial insemination, I mean, if u can afford it, u guys can have test-tube babies.

dats where ur sperm & her egg are genetically engineered or customised d way u want (no ss, as) just AA, b4 they r then joined 2geda in the lab

& replanted in her or a surrogate, u should really research dis option.

I believe in 'Love', but I also believe that doing the right thing is the only thing to do, so,

my piece is:

if u cant afford test-tube babies, or if its unavailable 2 you at present,

u can either wait or,

let it go, u owe 2 ur children, u can gamble like some have adviced, u can pray if u r holy-ghost filled as some have suggested,

but if u happen 2 give birth 2 a child or children with sickle cell & they go thru pain or even die,

then it's ur fault, not Love & not the almighty, all-knowing God (which I serve)

but u & ur girl. dont be selfish man, let her go.

u will definately find another, u still below 25, aint u?

p.s: every1 check out www.fusiongreen.com for free downloads of Nigerian songs, been using it myself its jsut so wonderful, easy, and the quality of downloads is mind blowing.

later pips

pleeeeese don't try dat think about the kids, have you ever seen a sickle cell kid before what they passes through pls forget about that love and be grateful to God for saving you from future pains. is a matter of time u will always get love.

You have to agree to separate. You might love her, but unfortunately you can't have her in the way you want.

If you have children you have:

a 50% chance of having children that perpetuate the disease.

a 25% chance of having a child with Sickle Cell

a 25% chance of having a healthy child.



In other words, the prospects are NOT good. In medicine, anything above 1%, unless it's the chance for survival, should be avoided like the plague.

You need to find you an AA girl, sharply.

so hard to stay in courtship 4 good 6years, but one i know is that God has always been faitful and He will countinue to remain faithful, if you think you really love her, marry her and have faith in God,
lay ur complain to Him and he will anwser you.

joey007:

so hard to stay in courtship 4 good 6years, but one i know is that God has always been faitful and He will countinue to remain faithful, if you think you really love her, marry her and have faith in God,
lay your complain to Him and he will anwser you.

Joey are you MAD? What you're suggesting is the equivalent of putting a gun to your head, pulling the trigger and asking God to deliver you from the bullet. Please, don't flood this forum with arrant nonsense and bullshit like that. There are two options and two options only.

1. He ends it with his girlfriend and finds someone AA to marry.

2. He has his vas deferens cut, his girlfriend has her tubes cut, they get married and agree to adopt.


THAT is the only way it will work out. I grew up with a friend who had sickle cell. Please do not, DO NOT trivialize the life of another human being that will suffer for its parents' fatuous love!

I am sorry about this your dilemna BUT please, don't think twice about it, end things now. Yes, you will be in pain, you will feel a lot of pain when you break things off but the pain you feel is 100% better than putting your future children through sickle cell aneamia. I know people who have it and it's no joke at all. Please for the sake of all that is good in the world, end it and find someone else (AA) to marry. Your future kids will thank you for it!

Part in good terms. you can be friends but marriage No. This you know already. So happy sailing people.

Do many people in Nigeria know about Nicosan?

It's a shame that a drug developed by NIPRD doesn't seem to be getting any government support. The least they could do would be to promote some educational campaign so that people are aware of it's existence.

In clinical trials 80% of patients who took the drug experienced no crises and the other 20% their crises were reduced by half.

In the U.S. we're anxious for this drug to be approved for use here!



NICOSAN, FDA Orphan Drug for the Treatment of Sickle Cell Disease




I would like to make you aware that there is a
non-toxic viable treatment for sickle cell in the
world and awaiting application for approval in the
U.S. and E.U. In clinical trials 80% of patients had no
crises and in the refractory 20% crises were reduced
by half.

Through awareness there may come availability for
those who so desperately need it. All it is going to
take is the effort of a few individuals, patients and
doctors to make this drug a reality in the U.S. sooner
than later. Although this drug was developed in
Nigeria, the man behind it, Dr. Ramesh Pandey is a
distinguished biochemist who has worked for the
National Cancer Institute's (NCI) Frederick Cancer
Research Center as a Senior Scientist, Head of the
Chemistry Section, Abbott Pharmaceuticals and
produced the first commercially viable generic version
of Vancomycin for Lyphomed Inc., a Visiting Professor
at the Waksman Institute of Microbiology at Rutgers,
the State University of New Jersey, holds patents for
biotechnology analysis and rare drug production
processes. He also holds several US and international
patents for paclitaxel and its new analogs. He is a
member of the Editorial Board of the International
Journal of Antibiotics and of several professional
societies. He has been awarded several grants from
NASA, NCI and NIH. The drug NICOSAN has been granted
Orphan Drug Status by both the FDA and E.U,



This new treatment for sickle cell is being produced in Nigeria
by an American pharmaceutical company, trade name NICOSAN®,
and it's proprietary name is NIPRISAN® . It was developed on the
premise of traditional Nigerian plant based medicinal practices
for the treatment of sickle cell disease.

It has been tested through phase IIb clinical trials and
found to be highly efficacious. Phase III trials have yet
to be completed however it was approved for sale in Nigeria
based on phase IIb trials and toxicity studies which showed
it to be safe and non-toxic.

Double-blind, placebo-controlled, randomised cross-over
clinical trial of NIPRISAN® in patients with Sickle Cell
Disorder

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7GVW-4DS346T-1S&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=211981d545303693affebb8c012d2cac



Efficacy of Niprisan in the prophylactic management of
patients with sickle cell disease

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VS8-43DFJCH-G&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=10528ecbab3ec7e977301fb9f2688ef6



NIPRISAN -- Nix-0699 Toxicity Studies

http://www.biospace.com/news_story.aspx?StoryID=15890720&full=1


Niprisan (Nix-0699) improves the survival rates of
transgenic sickle cell mice under acute severe hypoxic
conditions

http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2141.2003.04536.x?journalCode=bjh


THE DEVELOPMENT OF NICOSANTM/HEMOXINTM
A DRUG FOR THE MANAGEMENT OF SICKLE CELL DISEASE.
HISTORICAL BACKGROUND

http://shestco.net/5_tech_park/nicosan.pdf


NIPRISAN Case, Nigeria
A Report for GenBenefit (2007)

http://www.theparliament.com/NR/rdonlyres/F46A1A12-0A1A-41DA-9F5D-A11486CA9BFA/0/Nigerian_Case.pdf




This drug is a major advancement in the treatment of sickle
cell disease unfortunately it is not available in the U.S,
Although the compound has been granted orphan drug status
by the FDA and the regulatory body of the European Union,
to date investigational drug applications for the approval
process have yet to be submitted. Getting a drug approved
in either area is extremely expensive. Until there is
funding available to proceed with the FDA and EU
applications it will be difficult for non-Nigerians to
obtain the drug.

I do say difficult but it is not impossible. If you have a
hematologist or hemoncologist who is willing to put fourth
the effort there are special dispensations available
through the FDA for the importation of unapproved drugs on
a compassionate use basis.



"Expanded access program (EAP). EAPs are typically designed
to provide widespread access to a drug that has proven
efficacy in clinical trials but is still awaiting FDA
approval. They’re similar to standard clinical trials with
a specific treatment plan and certain FDA requirements, but
they have looser patient eligibility criteria. More than
23,000 U.S. cancer patients enrolled in an EAP for Iressa
before it was FDA-approved, for example."

"Single patient use. This program offers an experimental
drug to an individual patient, rather than a group. The FDA
approves these uses on a case-by-case basis. Decisions are
based on other treatments already available and information
about the drug’s efficacy and potential toxicities."

http://www.curetoday.com/backissues/v3n3/departments/specialreport/index.html



To date I have no knowledge that anyone has sought any
single use or expanded access from the FDA for Nicosan.
Unfortunately regardless of the dissemination of this
information thus far no one has put forth the effort to
obtain the drug for use.

If just one person would start the ball rolling with a
caring and concerned medical practitioner it could open up
the drug for wide spread use by tens of thousands of
patients across the U.S. Unfortunately thus far the general
response I receive is that people don't believe that their
physician would be interested in going to this sort of
effort nor do they themselves seem to be inclined to seek
the use of a treatment that could potentially end their
crises.

There has to be at least one physician out there who has
enough care and concern for his patients to be willing to
put forth the effort necessary to obtain this medication
legally. I urge anyone who is effected by sickle cell to
approach their physicians with this information and attempt
to obtain this treatment not only for themselves but for
all patients who could potentially benefit from it's use.

We already know the benefits of the treatments available in
the U.S. and the E.U, In many cases they are only
marginally effective or in the case of hydroxyurea cause
side effects so serious that many choose not to use it as
treatment. Here we have an opportunity to use a treatment
that has been shown to be highly effective, eradicating
crises in the majority of patients and reducing crises by
50% in the most refractory cases.

Although the clinical trial group was what the casual
reader might interpret as quite small it is common for
drugs which fall into the orphan drug category to use small
sample groups. Many orphan drugs have been approved based
on very small phase II and phase IIb clinical trials in the
U.S. In the case of FDA fast track status, a drug may be
approved during phase II trials if the drug shows
significant advantage over current approved therapies for
life threatening illness.

Fast Track Designation is a program that, if granted, is
designed to facilitate the development and expedite the
review of new drugs, thereby allowing the FDA to approve
drugs used to treat a serious condition or a
life-threatening disease with less safety data following
the conclusion of phase II studies, rather than phase III,
the normal practice.

The main criterion for a Fast Track Designated drug is the
potential to treat a life-threatening illness or fill a
major unmet medical need. Fast Track may be submitted with
the IND or at any time during the clinical development of
the drug. The Fast Track designation may allow a company's
application to follow Priority Review, Standard Review, or
a Rolling Review of the application.

http://www.fda.gov/CbER/gdlns/fsttrk.pdf



Nicosan by Western standards is an extremely inexpensive
drug. It is available in Nigeria without prescription at
$23/month for adults and child doses at $18/month.

Here is a link to the company and product website.

http://xechemnigeria.com/products.htm


I sincerely hope that you find this information helpful. I
would encourage you to forward and post this information
to any person, blog or website where persons effected by
sickle cell anemia can have access to this information.

Feel free to write me with any questions you may have.

Kristina Bruce RN

NicosanForSickleCell@yahoo.com

United Nations Economic Commission For Africa

Book Of Abstracts

Science With Africa Conference

March 3-7, 2008

page 30



Evaluation of Niprisan (Herbal Medicine) for the Management of Sickle Cell
Anaemia

Charles Wambebe and Hadiza Khamofu, International Biomedical Research in Africa, Abuja,
Nigeria, wambebe@yahoo.com, Joseph Okogun, Nathan Nasipuri and Karynius Gamaniel,
National Institute for Pharmaceutical Research and Development, Abuja, Nigeria.


About 70% of all sickle cell anemia (SCA) subjects reside in Africa, estimated at over 12 million. The prevalence of SCA is estimated at over 2% while infant mortality is about 8% and survival rate of SCA babies in rural areas by five years of age is about 20%. These statistics indicate that SCA is probably the most neglected (and sometimes forgotten by health authorities) serious public health disorder with serious mortality and morbidity rates in Africa. The objective was to undertake pre-clinical and clinical assessments of a herbal extract vis-à-vis management of sickle cell anemia using Good Laboratory Practice and Good Clinical Practice principles respectively. In Africa, there is no standard treatment for sickle cell anemia, only palliative management is generally available. In view of this situation, most
SCA subjects use herbal medicines. NIPRISAN is a standardized extract from four medicinal/food plants: Piper guineenses seeds, Pterocarpus osun stem, Eugenia caryophyllum fruit and Sorghum bicolor leaves. Short term toxicity study indicated that NIPRISAN was safe in laboratory animals. Bio-activity guided fractionation show that vanillin and aromatic aldehydes may be the bioactive moieties. NIPRISAN reversed sickled red blood cells and
protected them from being sickled when exposed to low oxygen tension. NIPRISAN dose- dependently delayed polymer formation of haemoglobin S. NIPRISAN induced 85% increased solubility of deoxy haemoglobin S. The in vivo efficacy study was undertaken at Children Hospital of Philadelphia, USA. Histological examination of lungs of control Tg transgenic mice carrying human sickle haemoglobin showed entrapment of massive numbers
of sickled cells in alveolar capillaries. NIPRISAN significantly cleared the lungs of sickled cells. Furthermore, NIPRISAN induced profound effect on the survival time of Tg mice under hypoxic conditions (p<0.0001). The phase II clinical data indicated that all the subjects benefited from NIPRISAN with no serious adverse effect. About 80% of the subjects did not experience any crisis during the study (12 months). The subjects experienced significant
reduction in hospital admission while attendance at school profoundly increased. Furthermore, there was no evidence of kidney or liver damage. NIPRISAN has been patented, licensed to an American company, registered and being manufactured at Abuja for
global market.

http://www.uneca.org/sciencewithafrica/content/swa_book_of_abstacts-en.pdf

AS plus AS = SS and AA
figure it out,

It is better done now than later coz if u assume love is blind,marriage will open it for u.Just admit the fact that u are not compatible and accept ur fate by breaking up nooooooooooooooooooooooooow.

@poster
IT IS BETTER YOU CRY NOW THAN TO CRY AFTER THE CHILDREN COME O.

It won't be easy then.

1

Well it most not be like that, its imoportant you get your status first. can breack your love. save your children

, ehm, but i know two ASes that got married in faith and had all children as AS and AA combination. Nothing is impossible but wiegh your choices very well.

Hi Patosky,i read abt ur predicament and i registered because of you.Its exactly the same with my friend who is AS and her fiance is AS too.they just discovered and they both fasted and prayed sincerely for a week and after dat went for anoda test and they found dat the guy's genotype had changd 2 AA. There's nothing 2 big 4 God, if u believ in Him sincerely and trust wit ur heart. Just try Him and see [color=#990000][/color]

I still beleive in miracle if both of you have faith i mean you agree go ahead beacuse there is power in agreement but if one of you dought it don't try it. USE YOUR HEAD AND LET THE LADY USE HER HEART.

My husband and I have been married for 3 years and we are both AS. We knew from the beginning and our love for each other is more paramount- you need it to be to deal with something like this!! My parents are also both AS and I have 4 siblings, 3 of us are AS and my baby bro is AA. None of us has SS and the is because of the power of GOD. I have 2 daughters and one is AA one is AS. HOWEVER during pregnancy, there is a test to find out if the baby will have sickle cell disease, sickle cell trait, or neither one. The test is usually conducted after the second month of pregnancy. It is very painful and you and your girlfriend need to make the decision to do that or not. That decision MAY lead to you having an abortion, its up to you two.

All I can say is there is NOTHING that God cannot do. If you love her, stay. Marriage is through the good, the bad, and UGLY. Be strong, you two will make it through.

If there is anyway medically marry her after all life is a rick,except you don't love her

It is not all about love. Think about the lifes of the children yet unborn , I know is difficult but u have to quit. Sacrifice this love for the unborn kids ,

know the dangers involved in getting married also, it's so difficult to turn my back because I'm so much in love with her

so you even know the dangers involved, why take the chance. you love her even to the detiment of your would be offsprings?ya know what it like to be in a sickle cell crisis? i bet, at that time, there will be nothing like love for ur girl.even the kid would regret your bringing him to earth.

Sorrry babes, u're quite lucky u found out before marriage, some people aren't that lucky. Look, You can still be friends with her but discontinue a gf/bf kind of relationship, for the benefit of you unborn child. Ok, its difficult but its a wise descicion, ok babes?
Sorry

Sorry, I feel your pain.

A friend of mine was once in a situation like this and he found it difficult to let go as he loved the girl so much.

There is a medical procdure which can detect if a foetus is an SS carrier so that the parents can decide what to do with the baby before its born into a life of misery, i don't think this practice is available in the country now, even if its available it will cost tons of money !!!

For people like me, who are pro-life, a product called the Amezcua Biodisc (The Biodisc) come in very handy to solve a problem like this , please visit www.amezcua.com or send me an email at dsomachi@yahoo.co.in

I wish you goodluck !!!!

I really feel your pain,the same happened to me and I had to let her go,its not worth it,think of your kids in pains just because you want be with her.its going to be hard no doubt.
Good luck