1 komentář

1. 

   Gurkan na 8. 6. 2022 v 2:56 pm

   Hi Anna,

   we are the volunteer team of 3-year-old Ahmed, a patient with SMA type-1.

   We are supporting Ahmed with his illnesse (SMA type-1)

   Ahmed is under the treatment in Canada, but his doctor does not want to prescribe any SMA medication. Because Ahmed did not take any medicine until the age of 3, his doctor reports that no medicine would be beneficial after this age.

   In other words, according to his doctor, taking medication after the age of 3 would not do any good and it will not be affective, it is thought that it is too late for medication. In Canada, there was no data on type-1 patients who took medication at a late age and showed positive improvement. Ahmed’s doctor says, you can provide scientific data on a type-1 patient who started using drugs at a late age and showed positive improvement due to the drug. If we can present this data, the way for the doctor to be given medicine to Ahmed may be opened.

   We see that you are a strong young woman who uses Spinraza at a late age and shows positively developing. We ask you for your support. If we can obtain a scientific document on how the spinraza drug has a positive effect on you (such as CHOP INTEND score, HFMSE test), we can forward this data to Ahmed’s doctor.

   If you have report that or document that showing and proving that the medicine is worked on you, it will be evidence to show the doctor that the medicine is effective.

   If you have a report documenting the positive effects of Spinraza drug, please share it with us. The gene test, the diagnosis of the disease, how old you take the drug, the document showing the development of the drug, etc. All data such as important evidence for us. We advocate that Ahmed can take medicine like you.

   Thanks to your support, we can prevent a child from being left without medicine.

   Best Regards

   Odpovìdìt

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