Thalassemia Patients and Friends

Discussion Forums => Living with Thalassemia => Topic started by: heytheredelilah on December 21, 2008, 02:34:55 PM

Title: Thalassemic Teenagers
Post by: heytheredelilah on December 21, 2008, 02:34:55 PM: It’s wonderful to see that technology has allowed one to get support from people going through the same experiences from different parts of the world, different cultures, and nationalities. It is always important to remember that we are not the only ones going through this, and that there are many, many others who are having the same thoughts everyday. At the same time, we must remember that we still very fortunate, in so many ways, and continue to see the bright side.

I’m 16 years old, and I’m thalassemia intermediate. I’ve been taking folic acid all my life, and have been taking Hydroxyurea and Prednisolone in different amounts for the past two years. I’ve had three transfusions so far. Although I never allowed this condition to affect me, always pushing as hard as the others, always being active school and in extracurricular activities – it would be stupid to say that I would be the same person without this condition. My parents, being supportive the entire journey, have never put boundaries or gave me limits, whilst at the same time, always placing my health at the primary concern, rather than education.

What surprises me is the lack of teenagers in this website. I’ve only recently realized how different of a person I would be. The way I was constantly reminded that I should be grateful, how classmates and fellow peers couldn’t understand why I looked paler, almost green, compared to others. How I never succeeded in sports, and was always the first to get tired. It’s not easy explaining your condition to an entire generation that does not have the maturity it takes to understand what this disorder is. In 5th grade, I changed schools to a much bigger one, and for the entire first year, I was verbally abused. Only now do I realize the impact that one year had on me. I simply remember it as a horrible experience. But only now I can look back and see what a strong character it has made me. To be able to face 120 students who did not want to be friends with you, and still manage – is no easy task, especially for a 10 year old. No one in fifth grade really cares, and fitting in and having friends is a 10 year old’s utmost priority.

After that, things got better. Others grew up, and I had more confidence in myself to go out of my way to make friends. At the same time, a close friend of mine passed away due to cancer. Maybe these events in my life have made me appreciate and realize how valuable life is, and that every moment counts. And that we have that opportunity, just like everyone else and that we cannot feel deprived in any way. I don’t want this to be a pity story in any way, but simply to enforce that I am who I am because of this condition, and even though I have always not allowed myself to fall behind because of it, it is still a huge, and will always be, a big part of my life.

Currently, I am challenging myself in every possible way in school. And I find myself physically and mentally tired, all the time. Which is what surprises me, once again. Where are the teenagers? Am I the only one my age going through this. I’m doing the International Baccalaureate Diploma [IB Dip] as well as being a very active member of MUN, in my school. I’m not sure if you’re familiar with IB, but it is similar to AP, in which you do college level courses in high school. My biggest worry at the moment is college – but I suppose that is a worry for many juniors and seniors. However, living in Asia, financing my health and education if I study abroad is something I am still finding solutions to. Luckily, I have a year and a half more to think about this and be able to stay in the protective shield of my parents.

I hope this was not a too long read, I started writing and the words just flowed. I feel like I’ve shared a lot today, so please don’t be a stranger and do share your thoughts.

Thank you for your time!
Title: Re: Thalassemic Teenagers
Post by: Manal on December 21, 2008, 04:37:01 PM: Hi Heytheredeliah and welcome to the site :welcomewagon

All what i can say after reading your post that i am totally impressed by your character and how you were able to face many challenges and change them to a positive attitude. What you passed by especially in your 5th grade was really tough for a child. I know how kids can be harsh on each other with no mercy, but this what is unique about your character - being a survivor, i really salute you and would love that one day my son would deal the same way as you did.

As Andy always wish....You were able to rule thalassemia instead of making thalassemia rule you, that is why your worries from college will be just as the normal worries anyone can expierence when going from one stage to the other.

You are right, we don't have much teens here, only one or two members who are 18 years. But your contribution to the site will be very valuable, we as parents need to know how life is seen from your side and also you will help us understand better.

Please keep posting and telling more about you. How was your expierence with hydroxyurea and why didn't you start it earlier??

Again a big welcome to you and greeting for your parents who must have contributed so much in building a balanced strong character like yours :flowers :flowers
manal
Title: Re: Thalassemic Teenagers
Post by: Andy Battaglia on December 21, 2008, 04:50:50 PM: We actually have a lot of teens who are members here, but most do not participate regularly. Any suggestions on how to get teens more interested in taking care of themselves? The teen years are when many teens become treatment slackers and get into trouble by skipping chelation. How can we have a positive effect on this fact? How can we get more teens to realize that they won't make it to 30 if they don't take care of themselves and that it is indeed, worth making it to 30 and older?
Title: Re: Thalassemic Teenagers
Post by: nice friend on December 21, 2008, 09:33:47 PM: Hi Heytheredelilah ,
I started this thread yesterday , but now i feel's that it will b good to say Welcome to you in your thread soo ...

Quote from: nice friend on December 21, 2008, 01:20:53 PM
Hi Heytheredelilah !..

:welcomewagon Heytheredelilah :welcomewagon
:welcomewagon :welcomewagon
I hope you will find answers of your all concerns and questions that you have in your mind, about thalassemia reltaed issues .. i hope you will find this community very helping, caring, supporting and encouraging .. its your own communit , soo , please dont hesiteate to share anything you want to share , and feel free to ask anything you want to ask about , soo start post and then keep posting , stay in-touch with us . its realy nice to have you here on forum ....
here is a link that is all about " how to post new or reply to topics ".. its a getting started like guide , i hope it will b helpful for you .... here is the link below .....
http://www.thalassemiapatientsandfriends.com/index.php?topic=1858.0

Best Regards
Take Care
Umair
:goodluck
Title: Re: Thalassemic Teenagers
Post by: Zaini on December 22, 2008, 12:52:12 PM: Hello and welcome on the forum, :hithere

Your approach towards life and thalassemia really impressed me,i wish all teenagers will have the same attitude,You are right ,we don't see many teenagers here,most of the members are moms or older thals,keep posting and motivating us :hugfriend.

Zaini.
Title: Re: Thalassemic Teenagers
Post by: Lyanne on December 22, 2008, 02:01:47 PM: Hi! Welcome!!!!! Hope you keep on posting!!! Inspire the younger ones and hope you keep on the faith! :hugfriend
Title: Re: Thalassemic Teenagers
Post by: cherieann on December 23, 2008, 07:43:37 AM: Welcome to the family.
It does feel good being able to let the words flow.
Never stop sharing your experiences. :hugfriend
Title: Re: Thalassemic Teenagers
Post by: heytheredelilah on December 23, 2008, 08:14:27 AM: Thank you all so, so much.
The responses I've written are more than I've ever expected. I really appreciate it.
Manal, I will read what you wrote every time I feel low. And I'm taking hydroxyurea only recently because after a long of searching my parents found a really good doctor.

It's hard to talk to my parents about these things, I'm sure you can imagine.
Perhaps, that is why many teenagers choose to not think about it, like I did till now.
And perhaps, why I finally looked for another outlet to talk about what I've never said out loud.

Andy, I would really like the same. Parents can really influence this. Although, I do know that the majority of Thalassemics in Asia do not have internet access.
I'd always love to talk or email with them, if you pass them my email address.
thelinebetweenfantasy@hotmail.com
Title: Re: Thalassemic Teenagers
Post by: Dori on December 23, 2008, 11:05:51 PM: Hi,

Welcome to the forums. I hope you would like it here. I found it interesting to read your story. And yes, it's hard to talk about such things with your parents. I'm afraid that I can't give you any idea how to do that.

Dore
Title: Re: Thalassemic Teenagers
Post by: nice friend on December 24, 2008, 09:42:31 AM: HI heytheredelilah ,
hope that you will b fine ,
Quote
Andy, I would really like the same. Parents can really influence this. Although, I do know that the majority of Thalassemics in Asia do not have internet access.
I'd always love to talk or email with them, if you pass them my email address.
internet facility is widely available in my contry ( Pakistan ) almost 70% - 90% .
but the probleme is ,thals dont know how to use computer and they dont use it... i asked my sevel frineds at thal center that come use internet and join this community and try to get information that you need and that you are seeking for and asking to ur doctor... all r financialy strong soo there is no probleme of but some of them dont use internet some dont use computer and some said they dont have spare time as they have joined their father at bussiness ...
as for me , i will join my father within few weeks ( it was my commitmet to my father that i will join him after taking controle on Iron levels ), but internet is my life and life's style , time will b shorten but i will ot gona leave internet ... as for you said there is a few teen agers here ,,, yeah i m just passed to teenage , but i m still teenager at mind , cant you believe it ask to any senior member of this forum :rotfl :rotfl :rotfl :rotfl they will let you kow how annoying i have been ... anywayz, hey where are you from ??? country ..???....

Best Regards
Title: Re: Thalassemic Teenagers
Post by: ye on February 17, 2009, 03:02:14 PM: hey heytheredelilah,
im glad to hear your story, somehow i can relate to it.
having thalassemia made me want to push myself further and further. somehow it feels like i want to prove, at least to myself, that having thalassemia is not a hindrance and that i can do what 'normal' people can or even better. although it is really tiring! I have even tried mountain climbing/hiking 3 times! haha!
The difference between our stories is that i never had a problem fitting in and i feel bad for you. I pretty much live like a 'normal' kid and teenager outside the hospital and our house. Most of the people around me doesn't even know i'm sick even my friends. I did not intend to keep it as a secret from them but i guess i prefer them not knowing so they would not treat me special or sick. plus, as you said, it is really hard to explain things...
Title: Re: Thalassemic Teenagers
Post by: Zaini on February 17, 2009, 04:51:12 PM: Hello Kaye,

Your approach towards life and thalassemia is very positive,keep visiting and posting,we need members like you :) .

Zaini.