Thalassemia Patients and Friends

Discussion Forums => Thalassemia-related Issues => Topic started by: trinigirl on October 03, 2007, 07:05:36 PM

Title: Reproduction
Post by: trinigirl on October 03, 2007, 07:05:36 PM
Can Thal major patients have children? Why not? Have any of you tried but failed ,what happened to cause failure ? thats what i want to discuss.

my experience was bad!
Title: Re: Reproduction
Post by: Andy Battaglia on October 03, 2007, 07:07:18 PM
Thal majors can have children. We have several thal major moms in our group.
Title: Re: Reproduction
Post by: trinigirl on October 03, 2007, 07:26:28 PM
ANDY,
my docs keep telling us we cant.but we know its 50-50 but they r negative.

i was pregnant an had to abort i was not prepared,i had a conceptive coil implanted but it disappeared and i got pregnant they gave me an ultimatum  :huh and my tubes are tied now.i wish i could i change that.my bfriend is still sad  :o :o that they did that but im so young to have had them tied.

i wish to talk to the thal major moms.can you help me.

thanks andy. :wah
Title: Re: Reproduction
Post by: Andy Battaglia on October 04, 2007, 04:23:57 AM
Miaki, Sydneygirl and Nur are all thals who are moms who frequent our site. You can try messaging any of them.
Title: Re: Reproduction
Post by: trinigirl on October 05, 2007, 11:38:39 AM
tanks andy
Title: Re: Reproduction
Post by: sydneygirl on October 06, 2007, 12:57:33 PM
Hi Trinigirl,
Dont let any doctors discourage you from having kids,i know they can be "negative" about it as i have experinced this first hand.But it is possible for thal major patients to have kids,i have one child who is nearly 4.If you need any more info feel free to message/email me,best wishes.
 :hugfriend
Title: Re: Reproduction
Post by: KHALIFA on October 06, 2007, 07:21:26 PM
HI
     from my experiance i have my friend she is a Dr have thalass.minor and her husbaned is thalass. major he is a rround 45 to 50 years old now and they have a doughter she is almost 12 years old but she is thalass.minor ... so don't worry a bout to have children..
           khalifa
Title: Re: Reproduction
Post by: Zaini on October 06, 2007, 08:35:38 PM
Salam Brother Khalifa,

Your post amazed me,i didn't know that a thal minor and thal major couple can have a kid wid only thal minor?  :huh i thought it was like if a no thal trait person marries a thal major then their kids will be having thal minor? am i wrong ?

Regards,

ZAINI.
Title: Re: Reproduction
Post by: Andy Battaglia on October 06, 2007, 08:57:38 PM
When a minor and a major have a child there is there is a 50% chance of having a minor and 50% of having a major depending on which gene the minor gives to the child. The odds are that half the time the minor will give a thal gene and half the time will give a non-thal gene. The major, of course, can only give a thal gene, so it is dependent on which gene the minor gives.

Those are not odds to take chances with, so planning is recommended.
Title: Re: Reproduction
Post by: Zaini on October 06, 2007, 09:13:24 PM
Thanx for explaining Andy  :)

ZAINI.
Title: Re: Reproduction
Post by: KHALIFA on October 07, 2007, 02:37:19 AM
hi
  Andy,,, i think the chance to have thalassimia major baby 75% and thalasimia minor is 25% if thalass.major got married from thalassimia minor  :biggrin
     
                     khalifa
Title: Re: Reproduction
Post by: Andy Battaglia on October 07, 2007, 04:06:11 AM
Nope. The minor will give a thal gene 50% of the time and a non-thal gene 50% of the time according to the odds. The other gene from the major is always thal. All their children would be either minor or major. There is no chance of having a non-carrier.
Title: Re: Reproduction
Post by: KHALIFA on October 07, 2007, 08:25:34 PM
OK OK
         i think the fasting month affect my brain i agree with you Andy 50% major and 50% minor.. because in my case i have chance to have 25% normal baby 25% major baby and 50% minor baby so i think i mixed up ... any way you still our BIG BROTHER  :wink
                                      KHALIFA
                                STATE OF KUWAIT
Title: Re: Reproduction
Post by: Shikha Mitra on June 03, 2008, 04:23:28 AM
From my readings, and experience I think, all new possibilities have opened up fro Thalassaemics. Yes, they can have children. Obviously risks will be there.. but those risks are no different from any other normal pregnancies..
If you are in good health.. with proper Hb levels.. proper iron levels... then what is the problem?
But one has to see a high risk OBG.. who will work together with your Hematologist...
In the USA,  my experience is, some doctors will discourage you because they have no experience in handling a Thal pregnancy.. while in some hospitals.. I have seen Thal moms...
Dr. Giardina of New York Prebestrian Hospital.. is well experienced in Thal... so is Dr. Allen Cohen.. these docs will def. encourage you to have children, provided you are in good shape...
Title: Re: Reproduction
Post by: Sharmin on June 03, 2008, 04:35:16 AM
I have read quite a bit about female thals having children - i have not heard a lot about thal major fathers.  I do know of one thal major who is a father.   

Do male thals have difficulty conceiving children? 


Title: Re: Reproduction
Post by: Andy Battaglia on June 03, 2008, 05:14:05 AM
With male and female thals, if there has been no severe iron overload that has damaged the glands, particularly the pituitary gland, puberty should advance normally, allowing them to have normal reproductive function as an adult. When there has been some damage, hormone therapy can often restore reproductive health.

http://www.ncbi.nlm.nih.gov/pubmed/11779601

Quote
Persons with homozygous beta-thalassemia were as likely as healthy peers to be in a relationship, employed full-time, sexually active, and using contraception and to have had children...This study suggests that with optimal therapy, most young adults with homozygous beta-thalassemia can achieve reproductive, sexual, and social experiences similar to those of their healthy peers.

Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on June 03, 2008, 10:04:11 AM
Hmm...This is quite interesting especially for me as I am almost 27 and still look like a pre-teen.

It's quite a serious matter but not an easy one to address; especially when ethical issues are related with it in societies like Pakistan; and by the time you discover this issue after marriage; it could be too late.

Come to think of it; I can't even ask my doctor about it as she's a lady. However, I wonder why she is not even slightest concerned about it and something relating to it like my looks. I know we have always put off our childish looks aside in a laughing manner but I can't believe even my doctors do the same. Why?!? My doctor put it off in a laughing manner when I first asked her about a year ago. Ever since I never asked her again; I guess it's a "guy thing" and she's not concerned about it.

I was recommended "Testoviron" by our buddies from Karachi but I'm not into self-medication (well at least if it's not natural)
Title: Re: Reproduction
Post by: Manal on June 03, 2008, 11:05:22 AM
Sajid, please insist on asking whatever you think is important to your health. A doctor is a doctor being a man or a woman shouldn't make a difference as this is science, please insist even if you feel she is ignoring this issue. Tell her about this medicine or you may just consult with someone else. Please remember that your well being is the first priority :hugfriend

manal
Title: Re: Reproduction
Post by: Canadian_Family on June 03, 2008, 01:49:49 PM
Sajid,

You can ask for a referral to male doctor, but the important thing is to get the situation addressed. To be honest, it is very unethical for her to laugh at your query. If I were you I would had took serious note of it as it is my health not hers.

Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on June 03, 2008, 02:13:37 PM
She was not just alone; another male doctor was with her and they were not laughing at me but rather with me.

The other doctor (who is a psychiatrist) was like "I wish I didn't have to shave every day like you. ha ha ha" :raspberries

Anyway even though I have very friendly terms with my doctors but I'm not going to ask her again.
Title: Re: Reproduction
Post by: Zaini on June 03, 2008, 03:16:28 PM
That's outrageous  :madno

ZAINI.
Title: Re: Reproduction
Post by: Ayesha on June 03, 2008, 03:54:26 PM
Ok, this is what I hate... not taking things seriously.., Sajid if possible you can come to Karachi then you meet endocrinologist in Aga Khan, my brother is under a male doctor (Dr. Jabbar) and my doctor is a female (Dr. Aisha), and both the doctors have said that we both can get married anytime we want and it defines everything that we are grown up *me blushes* lol ..., so brother it is just an advice... its better to show someone who can understand instead of taking it non serious.
Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on June 03, 2008, 04:39:15 PM
Thanks for the offer Ayesha.

It's not that I  want to look older THAT BADLY, but it's the attitude of the doctors. When they become friendly (too friendly) they don't take things seriously.

Anyway, I will be seeing another doctor tomorrow and ask him about it. I am visiting him as he has asked for my X rays for orthopedic consultation at his hospital for my painful joint problem as I've been on Calcium and Vit-D (alfacalcidol) for about an year without any difference. :-\
Title: Re: Reproduction
Post by: Ayesha on June 03, 2008, 04:42:01 PM
AaAaAaa Joint pains.. just don't talk :/, Salman have leg pain issue, and am having 'bit' joint pain but it does go away when I use calcium regularly :$ lol
Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on June 03, 2008, 04:47:30 PM
I'm sorry to hear that...

There's something strangely wrong with my joints. My doctor told me that it's the muscles that are weak and staying on Calcium and Vit-d will cure it. I was insisting that my muscles feel fine but nooooo he just ignored it and said that first we'll see if it cures it and then move to the joints/bones. Once again this proves what happens when doctors don't listen to "experienced" patients. He wasted a whole year and I'm still standing in the same place :(
Title: Re: Reproduction
Post by: Ayesha on June 03, 2008, 04:49:48 PM
SUE THEM!!! yes ;d don't mind but if am using a medicine and its not working I hardly wait for 2 months.. and insist doctor to check it out... so advice is still there, change ALL YOUR STUPID DOCTORS :p
Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on June 03, 2008, 05:08:59 PM
I wish I could, but this is Pakistan :biggrin

Anyway, I will ask this doctor tomorrow and see what he has to say. If he also proves to be a wisecrack then it's battle stations for me. :bat
Title: Re: Reproduction
Post by: Ayesha on June 03, 2008, 06:31:27 PM
Don't you worry am good in fighting :$ need any help? call me ;) LOL!
Title: Re: Reproduction
Post by: Sharmin on June 04, 2008, 03:38:22 AM
I hope your joints feel better soon Sajid. 

I hope that you get the help you need - remember treatment of thalassemia is treating every aspect of your health - physical, mental and emotional.  It's not just about survival - its about quality of life too.  It seems like your doctors are nice, and it's great that they can share a chuckle with you but I hope that all of your concerns will be addressed and you will have access to all of the help available to you.  Don't miss out on anything in life just because you were reluctant to ask your doctor. 

all the best,

Sharmin
Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on June 04, 2008, 04:42:02 AM
Thanks everyone!

I'll be off to the hospital soon. My joint pains are not so bad as they don't hurt in the daily routine; They only cause pain when I put too much stress on them like a long walk or when kneeling while praying.

Yes, my doctors are very nice and friendly, but sometimes I feel they should behave more professionally.
Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on June 04, 2008, 09:21:00 AM
I'm back from the ortho consultation. He said that nothing much can be done as Thals. tend to have weaker bones due to Iron overload and I should just avoid putting too much stress on the joints and should not worry about it too much if they don't hurt in the everyday routine. :dunno

Now, back to the topic. After the ortho consultation I visited my other doctor to tell him about what the ortho said and I also put in the question regarding this topic. Well, he said that I am a suitable candidate for Hormone Therapy and they will discuss it with Dr. Jovaira Manan (who is considered as the "Big Cheese" of Thal. in Pakistan) when she visits Islamabad soon. He also hinted me that this might be the reason of my recent heart arrhythmias and low Calcium absorption etc.

I wonder why wait for her if they already know what to do :huh I guess I'm the first adult they are dealing with and don't really know what to do.

Oh, well.... :dunno
Title: Re: Reproduction
Post by: nice friend on June 04, 2008, 01:57:01 PM
AOA Sajid :
it's nice to hear the name Dr.Joveria Manan in ur post bcoze she is an inteleigent and intelectual doctor dont worry everything will be fine .. i consult's to her when i was on  wheel-chair   and to that time i m a regular patient of her. as i  mentioned in my horror storie i was critical ... and now i m back on my feet i m running i m playing and doing everything i want to do ....  so take care of your self and try to consult to Dr. Joveria manan  ... you can also ask to her abt me .... coze i think i m one who heal  back in the mean-time  ............ okiey take care and dont worry i think she will  sugess D-Calc and Hormone treatment for you .......... take care bro we all neeed you and ur helpfull posts ............................
Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on June 05, 2008, 05:16:32 PM
Thanks Umair,

Today I asked my doctor (in a very subtle manner) about the Hormone Therapay and she calmly replied that everything was o.k in the long list of Hormone test that was done a couple of months ago (referring to the TSH, T4 and PTH etc); then I asked; isn't there another one and then she realized it and said that we should have a specialized Endocrinologist that can manage this according to specific standard as herself being just a child specialist can't prescribe the treatment (well at least not without studying)

I guess these kinds of issues arise in Welfare Trusts as they have a limited budget and don't acquire full time specialist until a specific case is encountered... :dunno

I guess their incompetence is quite justified until a specialist arrives :)
Title: Re: Reproduction
Post by: nice friend on June 05, 2008, 08:11:05 PM
Hi Sajid :
it will b better if u can go to Ganga Ram Hospital Lahore that is the better place for check-up and to start treatment .. if u can mange to go to lahore then it will b good... i beleive that u will find her very helpfull and kind ..... try to consult to her....  take care ... i can also send u her contact no... if u want ...  if need any kind of infoormation the please  dont hesitate  just write to me i will try my best to send u abt her timings of clinic contact no ........... take care
                                                     UMAIR
Title: Re: Reproduction
Post by: Sharmin on July 28, 2008, 05:29:01 AM
I hope you are able to meet with the specialist soon.  Please keep us posted :)

Sharmin
Title: Re: Reproduction
Post by: nice friend on September 06, 2008, 10:08:18 AM
hey sajid :
yesterday when i went to visit doctor , i also talked to her about you buddy .... i said to her  that : Mam someone is wating for you in Rawalpindi as well ...
she asked : who ?.
me : Mam you know him ?. Sajid
she said : oh sajid yes i know him...
then some little Identical thing were discused like he wear glasses and he is a graduate  etc..etc..

then i said he's planning to start new treatment but his doc told him that,
Quote
qoute from sajid, they will discuss it with Dr. Jovaira Manan (who is considered as the "Big Cheese" of Thal. in Pakistan) when she visits Islamabad soon

take care
umair
Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on September 07, 2008, 04:57:46 AM
Woah!

That was to be kept between the members of the site! Like we bash doctors all the time but wouldn't say it to them directly :biggrin
Title: Re: Reproduction
Post by: nice friend on September 07, 2008, 06:27:50 AM
hey chill buddy .... (who is considered as the "Big Cheese" of Thal. in Pakistan) i cutted off this line to our conversation just talked abt you are waiting and all .. it was to convey a message to her that the person she awarded a certificate for his strugle he is on hold for a treatment bcoze thier doctor want to consult to you before starting a treatment which he needed ....  and thats all ...dont worry i didn't leaked any confidential info of the site and friends .. thank you sajid for rasing a question and giving me a chance to clearify my position ....

take care budy
umair
Title: Re: Reproduction
Post by: §ãJ¡Ð ساجد on September 07, 2008, 06:58:17 AM
:biggrin

This is nothing compared to bashing we give the doctors all the time around here.

I just hope they are not too computer savvy to come here and read all the stuff :wink Especially my post regarding the Info Minister (a very close friend of the new Prez we have. They'll ban my internet account :crackup )
Title: Re: Reproduction
Post by: nice friend on September 07, 2008, 07:38:16 AM
well ...i m trying to call my doctor to join this site to read patients reviews about the medicines....i.. soo that it become easy to discuss about the medicines ... :biggrin
Quote
Especially my post regarding the Info Minister (a very close friend of the new Prez we have. They'll ban my internet account  )
nothing bad will happen to you buddy bcoze people in  Fourman show said several time that she ( health minister ) did the  mummy's role  in THE MUMMY RETURNS movie and she played this role without make-up  :biggrinhaahahhahha :rotfl :rotfl :rotfl :rotfl ..
Title: Re: Reproduction
Post by: Zaini on September 08, 2008, 10:40:00 AM
:biggrin

This is nothing compared to bashing we give the doctors all the time around here.

I just hope they are not too computer savvy to come here and read all the stuff :wink


Oh rest be assured Sajid,they are not,i've asked my daughter's ward doc a lots of time to just look up IP6 and wheat grass,so that he can prescribe these things to other patients,but no way,he won't do any such thing.

Zaini.
Title: Re: Reproduction
Post by: nice friend on September 11, 2008, 04:07:50 PM
Quote
Oh rest be assured Sajid,they are not,i've asked my daughter's ward doc a lots of time to just look up IP6 and wheat grass,so that he can prescribe these things to other patients,but no way,he won't do any such thing.
well .. my doctor showed anger several time on junior doctors ( sutdent doctors) when they did something irresponsible  like... if  they forget to note my BSL even one time , in their BSL recocrd chart ... then they faced her anger each time on their irresponsible behaviour ...  they weren't  too much irresponsible... they were soo caring and kind as well to me ..  it happened only one or two times in 15 days history of my stay at hospital ... actuly it happened bcoze of miss-understanding...
here is wat actuly happened : when they were depending on our own managed BSL record... Mam told them it is his own managed chart and i gave this resposibility to you to keep a record of his BSL ,, soo where is your managed BSL record ( and they were depending on my one chart and hadn't copied much of the BSL results from my chart to on their notes ) ... ( it was from my old memories , when i was extremely ill ) ..  i have used this word several time and hope that all of you are feeling tired to read this phrase again and the story ... and again..and again..... hhaha :grin

Sajid ,
Keepp updating us to your reoports, treatments and Medical examination reports ... and also about your health .. and tell me if any kind of help is needed ....i think that , it will b good if you contact to Dr. and if you could manage to go  to lahore .. it is difficult to go out of city  as i m facing this dificulty .. many times i have been delayed to check-up and late to visit to doctor bcoze its difficulty to plan and manage to go ...but have to do this everytime   ..... wish you all the best of the life and for the health ..

Best Regards
Take Care
Umair