Disorder or disease?

[Imken]

The longer I read posts on this forum, the more I wonder:

How does the majority sees Thal minor. As a disorder (something you have, but learn to live with) or as a disease (something you have to 'treat' with diet, supplements etc. and test all the time)?

For myself: I see thal minor as a disorder. I have it and when there are problems (rarely in my opinion) I get tests. My Hb is about 6 mmol/ml (normal is 7.5-10).
I don't think other diseases I have are related (astma, depression). I drink enough to not be de hydrated, I eat normal, not extreme amounts of red meat or any other special diet. I live my life, work, have a family, even do night shifts sometimes.
My philisophy of live is: When you do normal, you feel normal.

[sahil]

Hey, Imken...Your philosophy of life is 101% correct. I am a thal major, for me too its a disorder...because I have it and i am living with it....growing with it...and i have accepted it.

[marientina]

I don't think your poll is worded correctly. A disease means something that is contagious. You probably should word it as "do you think thal minor should be treated or not". And still, I find that whole argument problematic.

Also, it is not fair to think that because you feel fine, all of those who don't feel fine are incorrect or that is just psychological. We may be a small minority, and thal may be mostly asymptomatic, but having a positive outlook doesn't cure problems 100%. As a clinician, you know better than that.

I am a very positive person, but my entire life has been ridden with health problems that I did not inflict upon myself. I am not making them up and they are not in my head. I also understand statistics and coincidence and that depression and asthma and migraines and iron deficiency and wheat/gluten intolerance, etc.etc. are very very common so there is a higher incidence of thal minors with all that.

My argument is that thal minor in co-existence with other disorders can really affect quality of life. For some people like you, it hasn't luckily, but for people like me, it has and no two people are exactly alike...

I am sorry if I sound a bit harsh Imken, but the commentary I have encountered from the medical community has ranged from unsympathetic to negligent and I simply cannot accept that without any criticism.

[Imken]

Originally Posted by marientina

A disease means something that is contagious.

No it doesn't. Cancer is a disease and not contagious.

Originally Posted by marientina

Also, it is not fair to think that because you feel fine, all of those who don't feel fine are incorrect or that is just psychological.

I never said that, as well as I never said I do feel fine.

Originally Posted by marientina

We may be a small minority, and thal may be mostly asymptomatic, but having a positive outlook doesn't cure problems 100%.

But it helps a lot to see things positive. Also in live. And trust me, as someone who suffers from depression, I really know what I'm talking about.

Originally Posted by marientina

As a clinician, you know better than that.

As wel as I know lots of people are focussing on their disorder and think every other problem is related to that disorder, whili I'm often tired of the fact that when I do have another physical problem, lots of docters say: 'Well, it's your thal, learn to live with it.' i am more than just a woman with thal.

Originally Posted by marientina

I am a very positive person, but my entire life has been ridden with health problems that I did not inflict upon myself.

Most people don't, me neither.

Originally Posted by marientina

I also understand statistics and coincidence and that depression and asthma and migraines and iron deficiency and wheat/gluten intolerance, etc.etc. are very very common.

I back you on that.

Originally Posted by marientina

so there is a higher incidence of thal minors with all that.

But I disagree with that. Because of all the thal people within and outside my family, there is not more astma, depressions or anything else going on than the not thal people I know. And by that I also mean the patients I have in my office (about 3000). And the people with the most chronic diseases are not thal.

Originally Posted by marientina

For some people like you, it hasn't luckily.

It had, but I changed my way of live an the way I looked at Thal and it did a lot for me. I stopped seeing so much docters and I felt better after a few months. More relaxed. Slept better etc.

Originally Posted by marientina

I am sorry if I sound a bit harsh Imken, but the commentary I have encountered from the medical community has ranged from unsympathetic to negligent and I simply cannot accept that without any criticism.

Don't be sorry about how you feel. I hoped this poll would get some reaction from different views and opened up a discussion. And don't accept something if it doesn't feel right with you!

[Imken]

Originally Posted by sahil

Your philosophy of life is 101% correct. I am a thal major, for me too its a disorder...because I have it and i am living with it....growing with it...and i have accepted it.

I'm very happy for you, Sahil. Living with it and accepting it is the best way to deal with it, in my opinion. Altough you have to visit specialists, so you have to really deal with it more than I do. But I like your positive thinking! Keep it up!

[marientina]

I thought about it and realised that not all diseases are contagious..:D But you had already replied.

It is hard to communicate the gravity of something and not scare people. We want people to understand that thal is serious and that just because we learn to cope with it, it doesn't make it any less dangerous. As for my thal minor, I too have accepted what I can and can't do because of it and other things that make me less than 100% of what I could be, but that doesn't change my desire to be 100%. I try my best to feel that way.

I don't think that we disagree. It is just as frustrating to blame everything on thal as it is to blame nothing on it. All we can do is seek the truth. I am not a doctor and I don't have clinical experience. But I have had to become my own doctor because it is so hard to get the right advice. I have learned to try to ask the right questions. And I often come up with the wrong answers, but I haven't received better most of the time with my doctors. I am happy with my current hematologist because she is willing to doubt herself and myself equally.

In my family, the co-existence of certain problems are all over the place, but the thal minors share a lot more than the paleness of our skin...:)

So Imken, I asked my doctor for a picture of my blood last week. I don't know if she will be able to get one (too much bureaucracy) but I am jealous that you were able to look at yours! I should have thought about doing that when I had access to a microscope in biology class....

[Imken]

Hi Marientina,
I think you are right and we have the same opinion about things. Only my approach is different than yours. I don't get a regular check-up and I feel better this way. I don't feel frustrated anymore.

And what the microscope concerns: you have to colour the bloodcells first to see them. but it was interesting to see the different shapes!

[Neel_R]

Thal isnt that bad. Imagine having no arms, or legs, or being blind or deaf! I wouldnt be able to play sports!!! AHHH!!! No hockey/football/basketball, no taking my dog for runs and wife for walks (not that I walk her, but we go for walks ;)).

[MrsTayla]

Hey,

IMO, I think of it as a disease, I have a double dose of "da blues"(Sickle Beta Thalassemia)...but I don't let it have me, I have it. I think about what I am blessed with, and my family,and friends. God made me extremely special! People live with diseases everyday, and yes it's a struggle, but I agree with Neel, it could be worse.
I keep a positive attitude, I eat healthy, I exercise, I have some wonderful doctors that talk to me and listen, and I take meds. I am not gonna blame the world on my conditions, disorders, diseases....and it gets hard not to! I actually can be a bit thankful for my Beta Thal in parts, because I do have a small amount of normal hemoglobin. I think about others with type SS disease (SCD) and they have painful crisis a few weeks apart...getting transfused, receiving meds, having long hospital stays, and then coming home for a few days to just go back in a week or so later to do the same thing..So, I am thankful and blessed.


MrsTayla

[MrsTayla]

Well, I voted disorder but I meant Disease, LOL

MrsTayla

[Vik]

Hi Imken,

I believe the answer to a question like this is relative and depends who you ask. I could be wrong but generally an optimist will tell you that thalassemia is a disorder and someone who is going through a lot of health related issues will probably tell you that thalassemia is nothing but a disease.

Thalassemia as we know now is caused by a defective gene right from birth or since the time life is conceived. I generally see a disorder as something that is inherent rather than something that is caused by external (or even internal) elements with the influence of time, age, air, pollution, viruses, etc. I think genetic disorders that one is born with is a disorder of the body....but lately scientist are digging deeper in our genetic makeup and are able to find that many diseases and cancers have a genetic influence.....SCARY!!

I suppose I can answer this question in another way too - I think thalassemia is a genetic blood disorder ("disorder") that leads to thalassemia related disease and other disorders in some stage of life and perhaps earlier in life if one does not manage Thalassemia properly. (Diabetes is an example as such, depression, etc.).

I am also thinking of the many blood borne pathogens that Thalassemia and other transfused patients are exposed to when they take life saving transfusions. And sometimes, we do get exposed to pathogens that cause disorder or other diseases without giving us any chance or warning to escape.

I can also appreciate the thalassemia minor aspect, something that is there and yet not there enough to get a proper attention of a physician or a research scientist. Everything is so focused on thal-major that no one is talking about what needs to be done to treat thalassemia minor and to stop its spread and highlight awareness.

[laura]

Originally Posted by Imken

The longer I read posts on this forum, the more I wonder:

How does the majority sees Thal minor. As a disorder (something you have, but learn to live with) or as a disease (something you have to 'treat' with diet, supplements etc. and test all the time)?

For myself: I see thal minor as a disorder. I have it and when there are problems (rarely in my opinion) I get tests. My Hb is about 6 mmol/ml (normal is 7.5-10).
I don't think other diseases I have are related (astma, depression). I drink enough to not be de hydrated, I eat normal, not extreme amounts of red meat or any other special diet. I live my life, work, have a family, even do night shifts sometimes.
My philisophy of live is: When you do normal, you feel normal.

You don't seriously think that the members on here that are talking about supplements and diet are doing so because they think they are going to cure thal do you?
I understand thalassemia is a blood disorder(something I cannot cure through diet and supplements)
but I also believe it is the underlying cause to most of my other health problems and it is these OTHER
health problems that I try to help by taking supplements NOT the thal.

Going off your philosophy,quote you
"when you do normal, you feel normal"
it seems to me your insinuating that if you have problems its because your doing something that's not normal?

I'm sick of this attitude that people have towards people that are trying to help their own health like its some kind of negative mind set,
if I were being negative about the way I deal with thal I'd be feeling ill and not doing anything about it,
I can't see anything more positive than trying.
What IS negative is shunning other peoples ways of dealing with thal.

Personally I believe that being aware of your diet will make a big difference to a thals quality of life and when you feel better you feel more positive about life.
you say you eat a "normal" diet,what is a normal diet?
To me a normal diet is mostly fresh RAW fruit and veg,what I find abnormal is the diet considered
to be the norm in the west that seems to be comprised mostly of large amounts of overly cooked empty calories refined sugar and carbohydrate.
what percentage of the people that come in and out of the surgery you work at are over weight?
these people eat a considered to be "normal" diet,what are they doing at the doctors? they should be running about feeling positive because they don't worry about what they eat,
its just not the case.

The doctors don't know enough to be stating how a thal minor should feel,as much as they seem to like to believe it, things are just not that black and white.

If your thal minor and have no symptoms,then think yourself one of the lucky people because there are lots of people out there that do.

[Imken]

Hi Laura,

Please read the reply of Marientina and my reaction on her. I think you totally misunderstood me.

[Imken]

What I wanted to say with my topic is: Is it all worth it? Thal isn't curable, so is it worth it to check your bloodlevels every 3 months and be aware of what your eating, drinking, doing all the time?
Because I did that and found out it was controlling my life to much. Of course it's important to eat healthy, drink enough and sleep enough. But isn't that healthy for everyone?
I am not doing anything special for my thal exept sleep sometimes a bit longer. I never have my bloodwork done, because I found it more depressing and tiring than do nothing. Going to see a specialist etc.
And of course I'm more tired than people without thal, but I have to live with it and not by it.
And be aware: I am talking about Thal MINOR. Not major. That's something different.

[Imken]

Hi Vik,

I can really see your point of view. Thanx.