Family members of thalassemia patients

Almost as much as the thalassemia patients themselves, their family members are affected by the disease. 
Parents are often consumed with their child's illness.  The illness requires a lot of physical, mental and emotional energy from caretakers.  As parents are usually thal minors themselves, experiencing mild to moderate symptoms of being carriers, dealing with thalassemia can be very demanding and can take its toll.  Worrying about blood tests,  their organs that we cannot even see, their futures that we cannot predicts (only influence) it seems to be endless. 

A lot of juggling is required in the family with the thal child, other siblings, careers, and family relations.  Raising a family, keeping up with a child's treatment and the latest research can put strains on all relationships within and outside of the immediate family.  Siblings, as they grow, also feel the stress and the worry of having a thal major/intermediate sibling. 

Sometimes families settle into roles where one parent takes on most of the worry and responsibility for the disease - although both parents want what is best for their child - it becomes a routine and a habit for one person to take on everything.  As a thal minor, this parent can become quite run down and weighed down by the responsibilities of  seeking out information and making the difficult decisions.  One parent sometimes has a very hard time delegating responsibility and ends up doing a whole lot by herself/himself.

As thal patients grow and find partners, the spouses and partners are then affected by the thalassemia.  I have heard many times that the well being of a thal patient can improve drastically if they find a supportive partner.  A partner who encourages chelation, proper nutrition and increases the patient's self esteem can make an enormous difference. 

Our priority is our children, but in order to take good care of them and to make the most of the lives we have been given it is important for family members to take care of themselves.  I would love to hear how families of thalassemia patients find balance.  It would be great help for everyone to learn different ways to manage the disease of their loved ones, while being healthy and happy themselves. 

I am very eager to hear from everyone!

Sharmin

Hi Sharmin

Very valuable observation. You are right  in saying that one partner actually takes on everything. Most of the times it is the mother. We all are an example of this manal, mariam, you , zaini, dimple me and many more names which I am mising out.

Also one more thing whch we always miss out is thal minors have a lot of problems themselves. Andy was telling me a case about a thal minor how she suffered. We are all optimising ourselves on low hb as we are all thal minors
. In fact we as minor should make it a point to take take folic acid and also as most of us our low on iron a multi vitamin will not hurt.

 

Hi Sharmin,
I'm still new here but I have to say this is something I will be following as I am still learning how to manage. Sometimes I feel so desperate. My son is still very young and doesnt understand what is happening but when my other kids ask questions I wonder what I will tell him and how I will handle it all when he does. How do you get small children to comply with transfusions and chelation? My other kids couldnt even sit still a few minutes. My husband is still in denial even though four seperate doctors have said they are confident he has beta thalassemia as his Hb A is nearly zero in both electrophoresis. Whether its major or intermediate isnt known yet. Still waiting for the gene tests results.

Hi Zahra,

If Exjade is approved for children over two years of age where you are, it will make chelation much simpler if needed. Do you have the electrophoresis results?

Dear Zahra,

I know how you are feeling right now.  We have all gone through that stage where acceptance is difficult.  The only thing you can do right now is to gather as much information as you can and then take it one day at a time.  At this time you don't know if your child will present as a thal intermedia or a major but regardless of the diagnosis you will do a great job with him.  We are all here to help you through it, so you are not alone  . 

In the beginning it is always difficult, the first few transfusions can be a nightmare because the child is not aware of what is going on and does not know what to expect.  Over time, if you are relaxed and matter of fact about it, your child will surprise you.  Since the age of two, my son sits very still to get his IV and cooperates very well with the doctors and nurses.  In fact, he does not mind having thalassemia at all - I probably have a harder time with it than he does.  My daughter also thinks of it as part of our routine and does not seem to be bothered by her brother's treatment (she is extremely supportive).  My son says that this is a part of him and he is proud of being a brave thalassemia major, he does not think of it as an illness or a weakness in himself.  Just remember to trust your child and he won't let you down:)

I think that you will do a great job Zahra, don't forget to take care of yourself and to enjoy your children.  My son has posted on the site before, he is eager to post again - I will let you know when he does. 

Take care,   

Sharmin

Zahra,

see this link for a post from my son - one from a few months ago and one from today:)
Thank god - he's a pretty happy boy so far.  Hope it helps you.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1814.0

Sharmin

Hi Zahra,

Can i ask you where are you from,it's very hard to accept every thing,but once you accept it,it becomes easy to fight,and remember,your attitude would set an example for your kid,i know it's very hard for moms to sit still and not cry when there kid is in pain and crying,but believe me if you'll present a brave and calm face in front of him,he'll also learn to be brave and calm.
We are all here for you.

Zaini.

I want to thank you all for the great support. Sharmins sons post is so encouraging.
Andy I dont know the names of medicines used here for chelation but I do know they are oral now. The hospital my son is going to has 55 other Thalassemic patients. I dont know how many are taking the oral medicine but the doctor explained that the availability of this has been like a revolution in treatment b/c patient compliance is so much more. They also said they have very safe blood b/c its double tested first by the Abu Dhabi blood bank and then the hospital itself and have never had any issues of anyone contracting disease through the blood transfused. My son had two electrophoresis done . The first at 7 weeks by his paed had Hb A 0.3% Hb A2 0.3% HbF 78.1% . The second one had Hb A2 0.9% , Hb F > 40% and no mention of Hb A at 10 weeks. Initially I thought Hb F >40% meant 40% and was happy but the doctor explained that since ther is no Hb A > 40% means probably 98or 99% in this case. I dont know why they dont give exact values in this lab. I think they will repeat when he is 6 months old.

Hi Zahra,

The hemoglobin readings are odd as normally they should add up to close to 100%. Was there any mention of any other hemoglobin type, such as HbE?
I know the UAE does have very good care for thalassemics. Al Wasl Hopsital in Dubai has an excellent thalassemia center. I imagine Abu Dhabi also has a good center. Exjade has really made a big difference in chelation rates and is making a big difference in the lives of many patients. Any parent who has had to administer desferal can tell you that Exjade will spare both the child and yourself a lot of pain. Now is a good time for you to learn about thalassemia and the treatment. It does help psychologically to be prepared.

Hi Andy,
I thugght it was odd too that it doesnt add u to 100% . They did screen for Hb H but it was negative. What is the test for Hb E ? Maybe I can get it done next visit. Maybe i will get the bate thalassemia pcr report then also.

(excuse my typing skills,i am not very good at capitalization or puntcuation)



to all my fellow thal moms,


wow!this is a subject (up until 2 yrs ago) i never, ever thought i could bring myself to discuss it....

most of you who know me,know my story....for those who dont.......please read.


*foot note-my husband and i knew we carrid the trait BEFORE we concieved our daughter*
it is soooo amazing how time really does heal!! (you couldnt convince me of this 2 yrs ago!!! NOTHING ANYONE WOULD SAY WOULD CHANGE MY MIND THAT MY BABY WAS GOING TO DIE OF THALASSEMIA).

I still remember that fateful day.Lauryn was 4 days old,i was pulling upin my driveway at about 5:30 pm, on a Friday night,mind you, getting ready to take her out of the car.(i was showing her off all day long to family and friends,i was so proud and happy and relieved we havent heard from the pediatrician with her newborn screen results).of course i thought she was fine,because if she werent we would've found out about the thalassemia before we left the hospital,right?)

WRong!

My husband ran out of the house with the phone saying"hold on dr. i dont understand,heres my wife."(he looked so confused and nervous
I took the phone from his trembling hand,and was told "hi.mrs. acosta,this is dr.askar....Lauryn has Beta thal major,she needs a hematologist right away.)

i remember falling to my knees on my lawn screaming in disbelief.i ran into my house like a maniac,paralyzed and basically dazed.

i took my baby from my husbands grip and cradled her as if she was dead. i was preparing to say goodbye.

this wasnt supposed to happen,i thought.we had great odds.75% chance of her NOT having thalassemia.I thought someone was playing a sick joke on us.

those next few days i was heavily medicated.i was already post partum and hormonal and needed to sleep.

we took lauryn to the best hemotologist in my city. UNTIL we found out she was his FIRST AND ONLY thal major patient!

Thats when we inquired about phoenix childrens hospital. They care for 11 majors and 5 intermedias.

She had her first tx at 7 months,and is starting chelation this monday. she just turned 2 this august.

if you wanna know how im doing??? i am not 100% ok with thal,BUT i am 100% confident my baby will live a long healthy life.

Ive researched and learned A LOT about thal these past 2 years,and i know NOW what is to be expected. We call her blood "her vitamins" and like anyone who wants to be strong and healthy,they also need vitamins.

she cries less and less each transfusion (but i still bawl like a baby). she is a vibrant,playful,loving,energized,sweet soul.

i have a 9 year old son who cherishes his baby sister, and i am so very inspired by HIS courage and support,when mommys having a bad day.

my husband has a harder time dealing with thal.he is more adamant to discuss it or even ACKNOWLEDGE thal. that is him. that is how he deals with it. i reassure him i am here to help him cope or to share the information i learn regarding thal.

all these emotions and feelings would drive any sane person nuts!!! I would always ask "WHY ME!!!???)...well,why NOT me?

my faith in GOD has been restored everytime i see my Lauryn smile or when she plays with her older brother.

my point to this obnoxiously long post is, time heals.time may heal you but not your spouse RIGHT NOW.TIME HEALS. KNOWLEDGE IS POWER.IT CAN MAKE YOUR LIFE A HELL OF A LOT EASIER!!!
HAVE FAITH IN YOUR GOD,YOURSELF AND YOUR CHILDREN. LIVE LIFE LIKE ITS YOUR LAST AND NEVER THINK THE FIGHT IS OVER... BECAUSE AS WE GET CLOSER TO A CURE,ITS SAFE TO SAY WE'VE ONLY JUST BEGUN THE FIGHT!!!!!!
 

Christine

Christine 

Your story is the story of almost all thal moms,i remember our first days were like hell,going from one doctor to another,and really i couldn't believe that my 3 years old child,who was so healthy and so normal for three years,suddenly now have thalassemia? Doctor said you both carry thal trait that's why she has major ,we did our electrophoresis and i kept praying that our tests will come back negative and i'd shove the reports inthe doctor's face and say"huh ,you see my baby can't be a thal major,God just can't do that to me". But sadly and predictably they came back positive,Every doctor at that time seem like an enemy who wanted to expose my little baby to needles and foriegn blood.

I didn't know much about thal at that time and i used to sit by her side all night long and just cry,i felt like GOD forbid she might not wake up,my husband was even more confused,he didn't even know what thalassemia stands for,and why our daughter will need transfusions,i knew that little bit coz i had a cousin with thal major who died at age of 20 when i was a kid.

Any how,i can go on and on and on about this,but to suffice it,i am confident about my daughter now,she'll have her chances in her life and will live a healthier life Inshallah.And a big part of this confidence comes from this forum,so thanks to you all  .

Zaini.

Hi guys

Well.  I don't know for sure whether I am thal minor or not but i know that i have blood results a little below the normal level ( for me below normal means below normal and not " not too low it's nothing"). 

At first it was very difficult to digest that my son's blood results are not so good, it came as a shock since i never encountered any health problem as a child, i never even went to a hospital.  But I came to accept this fact.

When i came to know about my son's result, my husband and I did a cbc.  His values were on the higher end of the range but mine were on the lower end and even below normal except for the platelets which were slightly above normal (similar to my son's results). 

However what I have come to realise is that women come to terms with the facts and accept the condition but men seem not to be able to accept this.  My father still maintains that I have nothing and my husband says that his children are healthy and they do not want to discuss it.
JAde

Jade, you are so right in your observation and i don't know the reason for this.

Same is happening to me with my husband, at first i thought this could be a case of denial then i became upset that he is not sharing me what we have been through though i know how much he adores his son and ready to sacrifice his life for his, but at the end i came up that may be he belives that our son is in good hands (his mum's hands) and the best possible thing is being done. Still i always tell him that he has to be up todate with me cause who knows and who gurantee's his life, what if something happened to me, who will follow up the case and that really annoys me a lot especially that i am the one taking decesions and sometimes you need to have someone taking responsibility with you. So what i do is sometimes i write little notes on papers saying what trails i am following and what i am expecting from such and such and keep them in a seen place or just give them to him. He usually says that those information are so difficult for him to digest but he agrees to do whatever it takes to offer him something good.

The only good thing about this is that when comes times were i am totally depressed you find your partner calm enough to get you out of this situation , so we have to take the good side of it

manal

Yes, I understand your point but at times when you want to do something, the fact that they do not take it seriously, makes things more difficult to move forward.  At times I feel restricted because of their frame of mind.