How do you explain hgb levels as 6 are bad for you (or your child)

Hello,
As some of you may know I do have another blood disorder as those of you. My disorder* is called pyruvate kinase deficiency.
Research is done, but very little, lot is unknow and the newest research which started in summer '10 takes ofcourse a lot of time. I think i might think about it again in 2015.
However, the medical treatment of PKD is different everywhere, but more and more I see the "thal-treatment". One of the biggest problem is, from my opinion, the low hemoglobine levels one lives with.
After a splenectomy one often does not need any blood transfusion or only two a year. The problem exist by both groups, but I will focus on the last. Those often receive only a blood transfusion when hemoglobine drops so low as 6 or 7 gl/dl. I see this also happening with very young children. It is like I know the dangers, but they do not seem those. Maybe it is my age; I am only 23 year old, so what do I know?
Tonight I read again about this and I felt helpless. I do not know very well how to explain and teach this people carefully about this. Would you like to help me and offer me ideas/stories?

Thank you in advance
PS blood transfusion can also be replaced for iron chelation. Some people do not see the danger of excess iron which fears me too. In the past few months i have lost 6 friends and close ones to other friends to these diseases. One of them commit suicide. I fear she did not know how fond of her I was. I want to prevent other deaths; atleast I can try my very best... Not?

Edit: *= disorder is what the Dutch researcher used for PKD at a conference in Madrid in december 2010.

There is a very visible result of low Hb in many thals, skeletal deformities. No one wants to have to bear these deformities in facial features and the body's trunk and legs and there is never any excuse for doing this to any patient. This is the visible characteristic we see in thals, but this should also make people realize that all growth and development, including normal sexual development is compromised by low Hb. This can be completely avoided by maintaining an Hb of no lower than 9. With the chelation available today, there is no reason to keep low Hb levels in any transfusing patients.

Thank you Andy. I have lived for a few years also on such low levels. It frustrates me so much.

It are posts like this:

"Dore...my son is now 17 mths. old. Its been a year since his last transfusion. He has continued to grow at a normal rate and reach his milestones. His hbl averages between 6.5 - 7.5. His hematologist monitors him every three months now, unless we have reason for concern."

Pardon me for the non-medical terms...but when your hb lvl is low, it'll affect your hormonal groth (as Andy said), drain you faster (you get tired/headache easily esp. when you do physical acts, bcoz of low oxigen supplies in your blood), and in long term it won't be good for the bones (your bones are 'forced' by your body to work extra hard to produce more blood...bcoz the body always gets signals of lack of hb lvl).

I used to have my Hb at that lvl (6.6 - 7.5) when I was little. I had my first transfusion when I was 10. I may not know much, but I can tell the difference when my Hb is so low & I need it. I feel healthier & more comfortable when Hb's around 9-11. Well, maybe a 17 mths old can't tell what he feels yet...but I hope the decision will work for his best interest.

Nat, thank you for your contributation. I really appreciate your post.
How regular do you get transfusions now? If I may ask.

Not a problem, Dore...
It was once every 6 weeks. Haven't had any transfusion yet after my splenectomy (3 weeks ago).

Hi Nat, how are you doing now?

I have thought about it often. They are two forms of PKD. Having it or being a carrier. But I thought why is there not such thing as intermedia in PKD? Intermedia normally stays stable at a certain low level. About what kind of levels do you must think?

Forgive my English, it is in the middle of a horrible hot night,
Dori