not sure anyone will understand

  • Thread starter Thread starter Jordache
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Jordache

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So I'm trying to get back on my treatment. I was born with a genetic disorder that only became treatable in the 1970's; therefore, I am a guinea pig. All my life I've been told that as long as I was treated, nothing would go wrong with me. As I've been researching, I find that I've been lied to my whole life. Research shows that people with my condition have several symptoms that no one is willing to talk about. I feel a little lost right now.
 
Jordache said:
So I'm trying to get back on my treatment. I was born with a genetic disorder that only became treatable in the 1970's; therefore, I am a guinea pig. All my life I've been told that as long as I was treated, nothing would go wrong with me. As I've been researching, I find that I've been lied to my whole life. Research shows that people with my condition have several symptoms that no one is willing to talk about. I feel a little lost right now.
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I have Spinal Muscular Atrophy Type 3. I didn't even know I was handicap till I was 26 years old. I just always thought I had to work out more. Which I found out was incredibly bad for me.

I have no treatment for my illness. So..I think I can sort of understand?
I've done some research tests but they didn't help, actually kinda made it worse.
 
Hi Jordache, Boy do I know what you are up against and feeling.
My daughter has a genetic disorder as well, but it is only five yrs ago that she was diagnosed, and drs cannot tell us what will be her future.
I dont need to go into details, as Im sure you have lived this as well over the years.
One of the hardest parts was the anger over drs telling us for years so many things and dismissing issues simply because they did not know what to do.
Its ok to be angry, just dont let the seeds of bitterness take hold.
I know that you feel very wronged, but, from ones that have suffered as well, the only real healing comes in forgiving.
My prayers are with you in Jesus, that He will bring healing and peace to your heart.

Huge hugs and God bless.
pickles
 
I'm reading up on the new research and I don't know whether I'm in denial of having these problems, or if I should thank God that I don't have some of these problems... However, the more I read, the more retarded I feel. I mean that in a medical sense and not an offensive sense. Seems like the current research shows there to be frontal lobe damage and executive function deficits in individuals with PKU.
 
Jordache said:
I'm reading up on the new research and I don't know whether I'm in denial of having these problems, or if I should thank God that I don't have some of these problems... However, the more I read, the more retarded I feel. I mean that in a medical sense and not an offensive sense. Seems like the current research shows there to be frontal lobe damage and executive function deficits in individuals with PKU.
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Just from a little bit of reading it seems like if you stick to a very strict diet you can avoid most of the symptoms?
 
I wish that sticking to the diet would alleviate it all... but there are several studies which show many more issues even when the diet is followed.
 
Jordache said:
I'm reading up on the new research and I don't know whether I'm in denial of having these problems, or if I should thank God that I don't have some of these problems... However, the more I read, the more retarded I feel. I mean that in a medical sense and not an offensive sense. Seems like the current research shows there to be frontal lobe damage and executive function deficits in individuals with PKU.
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The medical information can change as quickly as each day.
One can only do what is their best with the information they have.
Most genetic disorders can affect each indivigual in some ways or all.
My daughter has many of the syptoms, but some she does not, so Drs did not see it for a long time.
If you do not have all the affects, be greatful that your body has a better chance.
You continue to be in my prayers in Jesus as you manage this genetic issue.

Hugs and God bless.
pickles
 
I will pray for you all.

May God bless and comfort our hearts and souls in His truth and love for whatever He has planned for our lives. Dear Lord hear our prayers. In Jesus name, amen

all I can give you is a prayer and some scriptures that remind us not to worry about things we can not change but focus on doing God's will and testifying to the world of His greatness:

Matthew 6:33-34 (New King James Version)

33 But seek first the kingdom of God and His righteousness, and all these things shall be added to you. 34 Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.
 
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