Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: questions on September 16, 2010, 09:19:55 PM
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Would anyone out there be willing to contact me to discuss what life with a child with thalassemia major is like? Thanks!
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pls tell what u exactly want to know
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yes,I agree with Ankita....what would you like to know...do you have a child who is diagnosed as thalassemia major or are you pregnant with one?
Everyone is here to help you however they can....
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My husband and I both carry the thalassemia trait and we are planning for our future. I would like to know anything you are willing to share. What is it like to care for a sick child or live with thalassemia? what are the hardships, what are the rewards? Would you do it all over again? If it is easier to speak privately I can send a private message. Thanks!
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Question,
in my view ... life with thalassemia isn't an easy life .. its hard to live with it and thalassemia doesn't provide any benefit or ease in life .. its just an extra heavy bag on the back .... its more likely a headachhe and burden .... thalassemia = more issues , more care to live healthy and to stay heathy, more expenses , more hard work to stay secure financialy ... its not the one bag of blood but 24/7 desferal treatment like back breaking things as well .... its not suumthing for sometime its a life time headache for both parents and thalassemic child.....
its just my opinion nothing more than that .. sorry in-advance if i hurt hte feeling of someone out there .......
Andy you'll b welcomed to edit this post if you think that necessory .... wat do u say abt wat i wrote above ?? ?...
Umair
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Umair,
I appreciate your honesty. I don't think anyone can answer this question the way patients can.
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I stop to think about the hardships that come with Thal and I want to think it was terrible, but in reality it wasn't. I had my share of illness. Always being the first to get sick. There was the tiredness and constant Dr's visits to check my blood at a young age. I think this is where the resilancy of children come into to play. I grew to like Dr's visits and hospitals. Getting a blood transfusion was like a days vacation. Friendly nurses, hamburgers and fries, all day tv. I still played with my friends until dark and even though i was told not to play sports I played basketball in high school. yeah, I sucked, but I had fun. I was always the smallest, but smartest so it all evened out. After a summer of playing and eating I grew to be the 2nd tallest in my class.
I am now Thal intermedia and even though I'm high energy I still struggle with spells of tiredness. I try to manage it as best I can by eating well, excercising and taking my vitamins. I'm 34 now and I have two healthy kids and a wife. I wouldn't change anything. I like my uniqueness.
I can't speak for how my parents felt, but they seemed to manage the situation well. My sister also has Thal, but she's a minor and hardly ever had any problems.
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Reading Umair and Bobby's posts,u can see how everyone takes thal differently,although both are correct in how they feel,but its a matter of how an individual would feel.
Being a parent,i'd say there are some difficulties,it can be tough financially sometimes,but other then that,my daughter never had any major health problems regarding thal,but again she is so young right now,and we do make an effort to keep her healthy by giving her timely transfusions,proper chelation and most needed supplements.So all in all,life can be a bit difficult sometimes with thal,but it ain't easy anyway,and what life throws at you just makes you stronger.
Zaini.
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As Andy said, no one can answer this as patients and parents. But, here are a few factors to consider.
-Location where you stay, so thals/parents can gauge of the management of thalassemia (blood transfusions), quality of blood, hospitals etc
-Social Impact due to life with Thalassemia
-Personal Financial Situation
-Parents/Family Health (This might be a secondary point but sometimes unhealthy parents can have a tough time managing).
-Support Group around (Families comes first but sometimes they might NOT be around to help). Sometimes, friends are much better as they understand more. ThalPal is surely a huge plus when it comes to getting support vitually!!
-Cures for Thalassemia (At the current time, only few options but may be in future, there might be more)
Umair - As Andy said, it is good to be honest and NOT draw a rosy picture when it is NOT.
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Thank you all for your comments! You have been so helpful!
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I raise a thalassemia major child. He is not as healthy as other kids, but he is as smart as any other kid. He can't run during sports day, but he can stay on the side line and cheer for his friends. He can't do taekwondo, but he can play the violin. He is compassionate because he has his transfusion at the cancer ward every 4 weeks. He knows how to treasure life because he has friends who had died. He is now 7, and a very happy child. I can't speak for him, as only he can tell me how he feels when he gets older, but I can speak for me. I wouldn't exchange him for anybody else.
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Hi sorry for late answer but i have my boy 14 and half years old i did for him a BMT before 5 years a go when he was 9 years in italy but am still suffuring from him a bout his kind of food and some kind of exersice also his behavior thalas. some time effect the behavior of child like he feel sad and feel jeliuse from his brothers start asking him self why they don't go to hospital like me why i don't go to school everyday like them and too much why ,,, these kind of why, what,how,and all that qustion make the parents have really headaches and that what happened to me now these all quistion start to be less after the BMT ... but am still watching him and give him more care than his brothers and sister,,,,
khalifa
state of kuwait
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I am a 26 year old Thal Major patient. I believe that you and your partner shouldn't hesitate to have children, the benefits far outweigh the burdens. Now that we have Exjade, there is no reason you shouldn't consider having children! No more daily injections, all meds are taken by mouth and a nearing cure.. life as a Thal patient these days is great :biggrin
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At the risk of playing the devil's advocate, I want to re-emphasize what Narendra, Andy, and Umair have said.
My parents wouldn't trade me for anything in the world, but at the same time, there is no denying the very realistic hardships that come from having a child with chronic health problems and there is no denying the hardships that the child himself or herself will face - perhaps not so much as a youth when parents are there to care for him or her but later in life when they have only themselves to physically rely on.
Some questions to think about:
- Will you be able to handle the financial burden of having a child with a chronic health problem?
I, for example, have never qualified for any government aid in terms of healthcare coverage and as a result, have had to rely on my parents' health insurance coverage and when that ran out and I was unable to do fulltime work and receive health insurance benefits, I was without insurance and paying full price for all of my medical expenses.
If my parents didn't have good insurance, here in the United States, healthcare costs are atrocious and they would have had to pay enormous amounts of money for all the times I have landed in the doctor's office and the ER/hospital.
Money isn't everything, but money IS a matter of simple practicality and constantly worrying about money and having to consider things like bankruptcy is just not conducive to anything positive.
- Will the child as an adult be able to handle the financial burden of having to deal with a chronic health problem on their own?
If the child ends up like me who cannot qualify for any sort of government aid as an adult, how are they going to manage all of their healthcare costs? Also, if the child's health takes a toll for the worse in his or her adulthood, what will he or she do if he or she cannot hold a job (and therefore is ineligible for healthcare benefits like health insurance)? Maybe in other countries, this is not such a big issue, but in the US, it most certainly is.
- Will the parents be able to handle all the stress related to worrying about the child, caring for the child, making emergency trips to the doctor and/or hospital on account of the child?
My mother's health deteriorated after a few years of taking care of me more or less full time and she has alpha thal trait (my father is a silent carrier). From midnight runs to the ER because of high fevers to taking care of me 24/7 when I was sick with fever (which was often) to managing the household besides, it was a LOT of work for her while my father supported the family on a single income.
- Will you have easy access to all the necessary care needed?
Good knowledgeable doctors, hematologists, etc?
- Will you and the child have access to a solid support network?
The psychosocial aspect can NOT and should NOT be ignored. Coping with a chronic health problem is stressful for both the parents and the child and the child may feel like an alien and even be treated as such compared to his or her peers if there is no empathy and a lack of support. Psychosocial issues on top of medical issues can be a double whammy in terms of the child's sense of self image, self confidence, and general outlook on life.
Where some of us have experienced acceptance and support from others, some of us have not.
Growing up for myself was exceptionally painful. Being Asian and with a chronic health problem made me a prime target for bullying - not just from the students, but from adults as well who did not understand my health condition - and that was something I dealt with well into my teens.
I did not live in a thal-friendly place - NObody except hematologists in the nearest metropolitan area had even heard of thal - and that was a price I - along with my family who oftentimes had to intervene with reluctant teachers and a reluctant school board - had to pay.
First and foremost, I am grateful and blessed to be alive and I am even more grateful to my parents for all their dedication, patience, support, and love for me.
But I refuse to deny that there are times when the challenges - faced by my parents in the past and myself currently - of managing thalassemia in addition to managing life in general have become overwhelming.
Life with thalassemia like Bobby said is not all about hardship, but it IS a very major part of it and can be improved upon or conversely made worse depending on the situations of the current and future.
Whatever your decision is, I wish you and your family the very best. :)
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Hbh,
I really wanna appreciate your honest and detailed answer :) you summed it up all .
Wishing you best of luck :hugfriend
Zaini.
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:hugfriend Thanks Zaini! :)
Thank you for posting about your own experiences as a parent, too. And I completely agree that it is about the individual - you, me, everyone else is an individual - so no two experiences or even situations and resulting advice would be the same.
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I too want to thanK Hbh for your honest answer. As a mom of a recently diagnosed child, I want to hear it like it is and know what I need to prepare for.
Thank you
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Thank you everyone for your thoughtful responses. They are really helpful!
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HbH, what a good answer...it was an insight into your mind and life...I think questions would have found all the answers in that one!
All the best to you, HbH...hats off to you...and I am in awe of your strength, patience and writing as well!
Madhavi
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If I wasn't being honest, then I feel that I would be doing a disservice to both the parents of thal children (who have thal themselves) and the children with thal who have all worked so very hard to get to where they all have gotten to.
I very much admire the parents who have so much patience and love and compassion and courage for their children and who have put so much of their time and energy into caring for them and I very much admire the children who have done the same - caring both for themselves and their conditions and for other people.
Hard work should be rewarded and to me, that means being honest.
I am glad that my honesty is appreciated.
:)
:hugfriend
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My husband and I both carry the thalassemia trait and we are planning for our future. I would like to know anything you are willing to share. What is it like to care for a sick child or live with thalassemia? what are the hardships, what are the rewards? Would you do it all over again? If it is easier to speak privately I can send a private message. Thanks!
I am wondering why PGD isnt recommended to such parents before a thal child is born like it is afterwards to try to get another non thal child for bone marrow matching???? :huh
Zahra
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There is an article about the current state of BMT in a post at http://www.thalassemiapatientsandfriends.com/index.php/topic,3910.msg39215.html#msg39215 HLA-matched sibling bone marrow transplantation for B-thalassemia major.
There is also a discussion on Facebook between myself and Dr Arthur Bank about this topic.
Interesting Discussion on Facebook about "France sees first 'saviour sibling'" http://www.thalassemiapatientsandfriends.com/index.php/topic,3889.msg39040.html#msg39040
The Facebook link is http://www.facebook.com/permalink.php?story_fbid=124764174263936&id=78504283219
Many of the issues about BMT are discussed in these articles and posts.