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genetics
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This patient support community is for discussions relating to a person’s predisposition to a variety of medical conditions such as Alzheimer’s, blood-clotting disorders, breast cancer, cystic fibrosis, diabetes, Marfan syndrome, and Ehlers-Danlos Syndrome.

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genetics

looking over this forum i find it hard to believe the lack of help offered...genetics is such a huge problem with families now..i expect more from a site like medhelp
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Avatar_m_tn
My daughter born last Feb. 17, 2012 was diagnosed with an unknown genetic order "46 xx add x qter" here in the Philippines. Even the US Library of Medicine does not have a record of her case. She has not been monitored by a geneticist because we can't afford one. She has stopped medical tests because we are now in debt. I think people who gets free genetic and medical tests in other countries are really privileged.
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Avatar_m_tn
My daughter born last Feb. 17, 2012 was diagnosed with an unknown genetic order "46 xx add x qter" here in the Philippines. Even the US Library of Medicine does not have a record of her case. She has not been monitored by a geneticist because we can't afford one. She has stopped medical tests because we are now in debt. I think people who gets free genetic and medical tests in other countries are really privileged.
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Avatar_m_tn
dear lisaob1:

Your statement is pretty generalized and rather negative.

Do you think you are at the official "Med Help Hospital" looking for a doctor to diagnose and treat you?

Do you have an appointment?

The people on this board VOLUNTEER to help each other with the information that they know.  they are usually very forthcoming in sharing their help.  So, until your lucky day of free medical care comes along, you will just have to either keep reading these boards or find what you are looking for in a medical book or doctor's office if that is all that will satisfy you.

I would be thankful if I were you that people do try to help each other here. You should take it for what it is worth

Cead
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Avatar_m_tn
Dear Noelachas,

Your story is heartbreaking.  There are so many excellent doctors in the Phillipines that I am shocked to hear that you are unable to receive care there. I am so sorry that you are experiencing this in such an early stage of your daughter's young life. I feel certain that there must be some help.  You absolutely have to have medical care for your daughter.

Your daughter is now 5 months old.  Medical care is crucial for her at this stage.

Please email me personally and I will attempt to try to help and direct you somewhere.

Cead
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Avatar_m_tn
dear lisaob1,

this is the post that I apologized for in email.  I will apologize publicly. Until I realized who you actually were, I thought you were just somebody out to complain about nothing. You really did not state the problem in the above email.  Now I know I was wrong because I know you and your situation.

I am very sorry

Cead
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Avatar_f_tn
you think im priveledged,my daughter was born in 1992,she died in 1996,my daughter now has complications doctors cant tell me about...and she has the same syndrome..she is now 18...so yes..i feel bloody priveledged...my daughter i lost i buried 3 times coz i was involved in the alderhey organ scandal...if you have heard of that...6 years after i lost her i buried her heart then 2 yrs later i buried all bits of her what they took in slides....so yes...i feel priveledged....and i still have no answers..how lucky am i eh? really?
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Avatar_f_tn
I'm sorry I was defensive,and I'm sorry for the battles u have to face and overcome. I do to though. I'm 38 and since I was 17 when I had my eldest daughter this life is all I know and all I will ever know. I'm not rich..far from it..but no matter how much money I had still wouldn't change my daughter illness,couldn't cure her coz ther is no cure. So dont judge or think u know me. 21 years.
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