Thalassemia and Depression

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Offline Andy Battaglia

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Thalassemia and Depression
« on: April 28, 2007, 06:53:30 PM »
Depression is very common among thalassemics. A study I saw recently found that 80% of thal majors studied had had psychiatric disorders at least once.

From http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9241900&dopt=Abstract

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Self-image was found to be significantly lower in patients with TM than in control cases ...Hopelessness and Trait-Anxiety scores were determined to be significantly higher in patients with TM than in control cases ...Eighty percent of the patients with TM have had at least one psychiatric disorder. As a result, the study showed that most of the patients with TM had severe psychosocial problems. Relying on these data, it was concluded that medical therapy of these patients should be supported with psychological aid and psychiatric treatment.

Over the past 4 years, I have communicated with literally hundreds of patients, parents and family, and friends of thalassemics, throughout the world. I have counseled many dozens of people online, on the phone, and in person, and have had many people confide in me about the emotional problems that that are involved with thal. Anxiety, hopelessness and depression are very common in thals and also, these are often found in the people around them- their families and friends. From the anxiety and hopelessness felt by many parents at the realization that their child is thal and the fear that often confronts the parent as the child grows, to the utter despair of the mother who has lost her only child, to the broken heart of the big brother who has lost his little sister and best friend, to the woman who experienced the devastating loss of her sister, leaving her questioning so much about life, there is an atmosphere of depression that accompanies thal. But for the thal patients themselves, it is a life of knowing there is a constant battle to be fought and ever new challenges just to stay alive. A friend recently told me that a thal never knows what it is to live life without thal for even a single day. When you think about this you begin to understand the emotional and psychological difficulties involved with having thal. Combined with the physical effects caused by iron overload to the endocrine system and the hormones produced, and the resulting effects that may also lead to anxiety and depression, the psychological problems can become significant. Regular counseling may be necessary for many thals if they are to deal with the constant obstacles they have in life, and as this study stated, this therapy should become a regular part of treatment for thalassemia.

It is important to note that the people around the thal patient can also suffer from psychological and emotional problems, as these can also affect the patient. And I have one thing to say to those around the thal. Deal with it. It is so hard to accept that your child is a thal and for friends, it is so hard to accept that you may someday lose that friend. It is so hard to accept that thal involves a lifelong treatment regimen. It is so hard to accept so much about thal. But you have no choice. It's reality and if you are to be of real help and support you are going to have to deal with it and accept that this is how your life will be from now on. How you deal with thal will have a tremendous effect on how your child deals with it. Treatment should be dealt with in a matter of fact way and the child should never be made to feel that he or she is different, weak, or incapable and especially never make a child feel that there is no hope. A thal child should be raised to believe that they can do anything they want in life and encouraged to follow their interests just like any other child. The difference parents can make is incredible. The difference that friends who accept you and treat you just like anyone else makes, is huge. Have empathy but do not pity. The people around a thal can make such a big difference and should never be underestimated. I have talked to countless thals who have told me that their own families tell them they can never have a real life and there is no point in pursuing education or training, that they can never have a career and the most heart-wrenching, that they can never have a marriage or children. I don't think things have to be sugar-coated for thals, but they should be allowed to have a normal life. They are perfectly capable of doing so, and should not be held back by over-protectiveness or ignorance. When I talk to young thals the single biggest emotional problem they face is anxiety. But it is NOT anxiety about their health and their physical future. The anxiety is about the prospects of never having a normal life and especially the thought of never having a mate in life. I have heard this from thals all around the world, even here in the US. This is very sad and also very wrong. Do not deprive your children of a real life because of thal. Do not believe that they have no future and NEVER tell them that they have no hope for a normal life.

The difference parents can make is so well demonstrated in our own Miaki. She has previously posted about what her mom did when she complained about being thal at

http://www.thalassemiapatientsandfriends.com/index.php?topic=179.msg1405#msg1405

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When I was younger I use to blame my parents for bringing me into the world of thalassaemia. I thought they hated me & they wanted me to suffer. At the age of 16 when I was at my peak of rebellion against my parents & the world in that matter and I thought I knew it all, my mother took me to a school were she volunteered her time as a carer for children with special needs.  Upon arriving at this school (I still thought my mother was nasty, but she was about to teach me the best lesson in life) she says to me “ I am about to take you into this school, when we leave later in the afternoon I will ask you one simple question. I will not be with you once we walk in here your on your own to do as you please”

I walked in & I was left speechless, I felt like a complete idiot that I carried on about my life. I saw children / adults in wheelchairs, in beds, some where missing limbs, others were blind, others couldn’t walk, talk, needed aid in feeding & the list goes on. And here was me who was able to play ball with my friends, go shopping, get an education, & go out with my friends to the movies, for coffee. I didn’t need help in dressing, feeding & so on.

When my day visit finished & I got into the car with my mom for the ride home, not a word was spoken. My mother says to me “is there anything wrong with you?” After a long pause & tears rolling down my face I responded with a simple “NO”

My mother that day taught me the best lesson ever, go out there do what you want to do, become who you want to become, nobody has the right to stop you or take nothing from you. You have a disorder you need to take the right motions in life to keep everything in order so you too can see the world that is at your feet.

That changed me & that is what has made me who I am today. I thanked my mother for that special lesson. I was able to move forward & forget about the kids who use to tease me at school for being short, missing out on school often because I was constantly not well & the list goes on. We have to learn to ignore them because these people are not worthy of your company, your friendship, your trust of YOU!

I have known Miaki for several years and have met her in person at the Dubai conference. She is a confident, outgoing, dynamic individual who should be an inspiration to any parent. If you treat thal as a condition and not as the definition of who your child is, it will greatly minimize the emotional and psychological problems facing thals. I am not saying that a parent's approach will magically make all these problems vanish, but it can have a great and positive effect on the child. Deal with the thal and give your child a real chance in life.

This topic is very involved and even a bit controversial as not all will want to accept the existence of these disorders among thals, but I have talked to far too many thals with similar problems with depression, to believe it is some coincidence. Anemia alone can lead to depression and this may explain why so many minors also get depressed. I know how down I felt about my lack of energy when I had a hematocrit of 25 and my condition was only temporary. The body needs oxygen to thrive and without adequate oxygen, it may be impossible to ever feel "normal". This is why it is so important for all thals to do everything they can to maximize the efficiency of their oxygen carrying blood. Diet, nutrition and exercise are all keys and should never be overlooked. Do your best to make your body its best.

Parents, be strong. Friends, be there. Thals, believe in yourselves.
« Last Edit: April 28, 2007, 10:47:45 PM by Andy »
Andy

All we are saying is give thals a chance.

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Kathy11

Re: Thalassemia and Depression
« Reply #1 on: April 29, 2007, 12:53:34 AM »
Hi Andy.
Well written. :clap
Thank-you.

Still, I would argue that there is a lot to be desire about our health professionals and our communities that is still ingnorant in the matter of how to treat and deal with thal patients.

The denials and lies has to stop and we all need to be promoting the awareness  of thal, in every little way we can and at every possible opportunity we have  because like everything else,without educations of this topic changes would surely be slow in comming.
 Some people get mental ,because they are misundestood plus the disorder doesnt make it easy.
That 's  my two cents worth(LOL)
Kathy




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Offline Andy Battaglia

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Re: Thalassemia and Depression
« Reply #2 on: April 29, 2007, 01:42:20 AM »
Kathy,

I couldn't agree with you more and if you read the post I did shortly before the depression post at

http://www.thalassemiapatientsandfriends.com/index.php?topic=902.msg7236#msg7236

you will see my sentiments about this.

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I don't think most doctors, including thal-familiar hematologists have much of a clue when it comes to treating thal minor.  It just hasn't been studied or given it's due. I really don't understand why either. If you have a significant mutation or deletion of one of your two hemoglobin genes, it just follows that you won't have anywhere near the amount of good hemoglobin required to provide oxygen throughout your body. This does seem to lead to a variety of health problems in affected minors, but for the most part, this has been ignored by the medical profession. This needs to change and my feeling is that it will take many minors speaking up about their health problems before anyone takes notice.

Minors, please do speak up and let your doctors know that having thal minor does indeed cause many health problems.

Patients, it's up to you to change the world. Only when thal minors speak up and let doctors know that life as a minor is not a piece of cake, will anything change. We do our part here but you also need to do your part in bringing things to the attention of your doctors and when it is needed, bring them evidence from other minors to show the doctors that it is not just you who has these problems. Speak up.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Thalassemia and Depression
« Reply #3 on: April 30, 2007, 01:28:23 PM »
Hi Andy,

your post helped a lot as usual.

I am a thal minor and what i am experiencing now a days is shortness of breath,very fast heart beat,i feel like my whole body is shaking and shivering from inside,body pain,drowsiness,not feeling like doing anything,just lie down and breath,,talking is even an effort,blurred visionmissing periods,and top of all depression, i don't know it's due to the hot weather here or something else,and the symptomps have worsened i believe since i have started using a drug called DIANE 35 for regulation of periods.and when i complain i am told that it's all in my head  :mad and i should stop visiting this site and thal minor is nothing.i DO NOT AGREE  :( .

ZAINI.
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Offline Andy Battaglia

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Re: Thalassemia and Depression
« Reply #4 on: April 30, 2007, 03:03:19 PM »
Hi Zaini,

Any doctor that prefers that the patients remain ignorant about their own health is a fool. Telling you that it is all in your head is ridiculous and should set you on a search for another doctor. I am sorry your doctor believes health is only the province of an "elite" medical club, but in today's world, information is at our fingertips and there is NO reason patients should not inform themselves. It's time for doctors to stop relying on outdated information about thal minor and time to start talking to the patients suffering from its effects!

The side effects of Diane 35 can be seen at http://www.chemist.co.nz/pm/Diane35ED.cfm

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Adverse Effects
Serious undesirable effects of Diane-35 have been referred to in the contraindications and warnings and precautions sections.

The following undesirable effects have been reported in users of Diane-35 and the association has been neither confirmed nor refuted:

Breast tenderness, pain, secretion; headache; migraine; changes in libido; depressive moods; contact lens intolerance; nausea; vomiting; changes in vaginal secretion; various skin disorders; fluid retention; change in body weight; hypersensitivity reaction.
Andy

All we are saying is give thals a chance.

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Kathy11

Re: Thalassemia and Depression
« Reply #5 on: April 30, 2007, 11:43:04 PM »
Hello  Zaini,
It is sad to hear of your struggles,but i know it too well For yrs i was on the merry-go -round or call it musical chairs of doctors dance.
Yes it is the doctors that is messing with your mind because they are not taking your complaints seriously.
The heat would be one of the reason your are  feeling uncomfortable, because it can make your Blood pressure rise and in return your circulations becomes sluggish and it causes the swelling and then as a result it causes lots of pain.It also could be the new medication contra-indicate with other med you are already taking.
Please  change to another doctor that is if you can.It is very rude for the doctor to disrespect you by questoining your ability to know your own body and your pain.
Visiting this site has been an eye opening for me and I beleive it has added quality to my life,the fact that I learnt about this disorder  its like getting an education and has allow me to make choices that i would have otherwise not done.Knowledge is power do not let any fools take it away from you.
I believe you and Keep trying untill you are satisfy  good luck."where theres a will there is a way."
Love Kathy :hugfriend

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Offline Eponine

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Re: Thalassemia and Depression
« Reply #6 on: May 01, 2007, 03:03:18 PM »
Hi Andy

OMG! Just the topic I needed to read about! Extremely well written Andy. Spot On! Miaki, read your story before and it really touched my heart. You are all so right. We should not treat ourselves as sick people. I'm glad I had my parents who brought me up the way they did.
My parents didn't think that I would live past 12 years not to mention the age I am now...  :mouthshuthee. Not 30 yet!!  :winky They insisted on an education for me and allowed me to take part in many types of sports even if it didn't seem to safe to my mum and hence her hesitance.
She still doesn't quite approve of the sports that i do (scuba diving) or my lifestyle (staying up late, going out too often, taking on too many things) but I know that they are proud of me. I am one of the many thals here in Singapore who is managing well (except for my ferritin... :banghead sigh... ) and I thank my parents for that. For believing in us when the whole world didn't. Friends who know I'm a thal feel that they can't match up to how I lead my live - with so much energy. My point is that I'm glad I was treated like of my friends. Very rarely do I feel any different. Only when it was blood and desferal time...  I am proud of being a thal most of the time (when I'm not depressed).
Yes, depression. THis is something I was and am still struggling with. Now that you mention, I do find that I get pretty down when its nearing my transfusion date and much better when I'm fed. But I still do get into bouts of depression on days when something triggers it. I noticed that this cycle only happened recently, few years back (maybe I finally matured!!) and it was by the situation/s I was going through. Its something I've been meaning to ask my doctor for some referral to some psychologist but I'm not sure how to bring it up to her. How do you tell a doctor who's been treating you physically you need help psychologically.
How do you bring treatment to a new level that includes psychology treatment when treatment here is supposed to be first class. How would doctors be convinced? Do you need special trained psychologists / psychiatrists in thal area to manage a thal?
« Last Edit: May 07, 2007, 09:21:37 AM by Eponine »

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Offline Zaini

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Re: Thalassemia and Depression
« Reply #7 on: May 01, 2007, 07:00:47 PM »
Hi Andy ,
Thanx for ur help,i've read all these adverse effects on the leaflet came with the medicine before starting it,, and that's why i think that it's worsening my condition,but dotors insists that i should continue with it,,another doctor advised me to take it with Motillium(for nausea).

Thanx Kathy,

for ur kind words,my blood pressure is mostly on the low side,,and i sweat a lot,, so i am advised by docs to take a lot of fluids,and i do my level best for it.

Yes u are right that this site has effected our quality o life in different ways,,doctors are never that much informative,and i don't know but i felt that when i ask so many questions to my daughter's hemo,it offends her some how  :dunno,but whatever i am learning here, i want to share it with her.

ZAINI.
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Re: Thalassemia and Depression
« Reply #8 on: November 04, 2008, 04:44:15 AM »
Hi Andy,

I'm glad to read what you've written.  My mom ignored my symptoms but over-protected my behavior since I was young.  I am seeing a therapist who diagnosed me of childhood PTSD and anxiety problem.  I just learned how to expressed myself a year ago after 40 years.  I tried not to feel I's worthless anymore.  But sometimes when I have additional things going on which lower more blood cells, I really have the thought of 'worthless self' again.  My mom always complain why I was different than other siblings.  I always thought that I was abnormal.  I also have the anxiety of not be able to go back to a normal life. 

I always compare with my husband who is a physical healthy guy.  The more I see he's energetic and I'm fatigue, the more he complains that I am not an endurance person whom he is, I feel very hopeless and depressed.  I don't have energy to keep friends or go out.  I pray a lot.  I believe my prayer was heard.  That's why I am brought back to this site after a year. 

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Kathy11

Re: Thalassemia and Depression
« Reply #9 on: November 04, 2008, 10:21:22 PM »
To Teresa.

I hope you are feeling better to day,

Yesterday is gone and we are facing a brand new day.
I hope you continue to post and try to learn about  how to cope the best with your situations,
I have compassion for you and I'm really sorry if I hurt your feelings,It was not my intentions.
For your well-being, I hope you see it in your heart to believe  and to see the sincerity in another.

free yourself, don't harbour recentment towards people.Its not worth the effort.  you need your energy to fight the illness.

I ampathize with you .that is because at one stage or another I've felt like you mentioned in your post.The people on this web-site has been a tremendous help to me and I am so proud of the friends I have made here on this forum.I wish the same for you.
Try to achieve  peace of mind ,It too, hard to be at odd ends with other people,
We all have the power to change what we don't like with ourselves,

Have a nice day :grouphug :grouphug :grouphug
With Hope and faith  from  Kathy



 



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Offline Manal

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Re: Thalassemia and Depression
« Reply #10 on: November 05, 2008, 12:25:47 AM »
Kathy, you are so lovely :hugfriend

Teresa, togather we will be strong. We are all here for you. Please do share you pains with us. I  know how you feel cause stress and anxiety are familiar with us all and we can feel for you more than any one else, please keep posting :hugfriend

manal

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Offline Isis

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Re: Thalassemia and Depression
« Reply #11 on: November 05, 2008, 08:30:02 PM »
Depression is too widespread a phenomenon for it to be linked in anyway to having thal, study on any sample of population in the world would turn up some depression. Statistics show that almost every human being will go through a phase of depression some time in their life.
Now, when it becomes medically worrisome is if;  1) the depression goes on for too long(over 6 months);  2) starts disabling the person; 3) there may be no known explanation for the depression even to the person themself.

Depression with no explainable or obvious causes, often  requires treatment by psychiatrists because it may be due to chemical and hormonal imbalances requiring medication.

The kinds of depression felt by thals, unless they fall in the above-mentioned categories, do not require psychiatric treatment but counseling is always a good idea.

Psychological counseling is, to begin with very much a necessity in fact for parents of infants/young thals. However, rather than by psychologists we notice that thal support groups, other experienced  parents of thals, doctors who are thal specialists are the best suited to help them. 

The attitude of parents I would say, is the single most imp. foundational factor of the attitude in the thals as they are growing up.

At this point, I must mention that I find a lot of negative attitude in many parents I have talked with esp from rural areas. This is due to the tremendous amount of financial burden they face, with no financial or any kind of aid whatsoever from the government. This is a very different kind of depression I come across with thals and their families, due to the varying standard of medical treament and financial burdens faced by the thals in India. Everything is (so) totally and completely left on the parents of the thals to handle on their own. Thankfully,the standard of treatment and knowledge amongst doctors has shown a great improvement from couple decades ago. There are so many parents as yet who are unable to afford even filters during blood transfusion for their children. While in many developed countries the filtration of the blood is done at source of collection itself, which removes/reduces blood reactions immensely. When the parents have to see their kids suffer more than is required by any thal in many a place in the world, - like regularly having reactions during blood transfusions...I would wonder, who in the world, would not get depressed ? [there are differences in the struggles faced by thals, geographically: and this I will try and post about later].

As Andy said, anemia when the hb is low often causes depression, lethargy and apathy which unfortunately some 'non-thals'assume' to be laziness.....lol   So,this is a vast topic...could write a book on it.

Thals also have multiple thal-related probs and complications..one of them being  diabetes. There is a medically proven connection between depression and diabetes.

My phase of depression was when my medical reports showed a severe case of osteoporosis which later turned out to be osteopenia. (It was my childhood fear revisited, because I had fractured the same leg thrice during junior years of school. Missed a grt deal of school work of course, but somehow managed to stand first in class that year, first grade.)   

Although,the psychosocial issues that are faced by thals all over the world, as outlined by Andy are just as imperative to be understood and need to be addressed. 
 

Bottomline of it though, I'll say that ALL thals,their parents, are such warriors, such courageous people that I think we are like the Spartans................we do not think so much of the outcome of our battle in life, but we all will fight to the death. When I think of the courage we all have, I feel we can teach any people in the world how 'NOT to be depressed'. People derive courage and inspiration from us and feel silly to whine or complain, and I always smile when I hear this from anyone. 
 :biggrin
« Last Edit: November 05, 2008, 08:37:38 PM by Isis »

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Kathy11

Re: Thalassemia and Depression
« Reply #12 on: November 05, 2008, 10:49:39 PM »
Thank-you   Isis,

Nice Posting  :clap :clap :clap
We need, all the help we can get to understand,this debilitating illness .
Kathy

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Offline Zaini

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Re: Thalassemia and Depression
« Reply #13 on: November 06, 2008, 11:11:50 AM »
Shilpa,

That was great  :hugfriend we need more and more posts like this one,plz keep posting.

Zaini.
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Offline Dori

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Re: Thalassemia and Depression
« Reply #14 on: November 07, 2008, 10:47:07 PM »
I believe you can link depression to a lot of other disease, if not all other disease. I got a friend ( UK) who suffers terrible from Ulcerative colitis . Her depression is more worse than me. Though she is the best student of her class, or even her level.

I recognize myself in those stories. Besides that I have been nag at school. Especially at primary school, they ignored me in the last year of primary. Pupils and teachers stopped to talk to me. I was 12-13 year when this happend and I really didn't wanted to exist.

edited
« Last Edit: November 01, 2009, 12:34:32 PM by Dore »

 

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