One thing that having a chronic condition does is make you grow up quickly. When Ayrie is in the hospital he is as composed and mature as an adult. He may have been throwing tantrums the day before but the minute we board that plane to fly for Boston he is the epitome of good [...]
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My son was diagnosed with a rare disease two years ago. He has had twenty surgeries, countless doctors appointments and has been robbed of his voice. As a result I have willingly and aggressively plunged into the field of public health. I sit in classes these days where the people are talking in a language that sounds [...] There is a new clinical trial for propranalol, the drug that my son is taking for RPR. It says invitation only but if you are interested, your hospital may be able to work with one of the trial sites near you. If you want to try propranalol with your child, it’s worth asking about! The details are listed [...] It seems that this article is saying that the new drug might treat JORRP and RRP. What do you think? Click here for the full article. The new treatment is based on a form of genetic therapy called “antisense,” or AS, in which a synthesized strand of DNA or RNA targets the EGFR genes within a [...] |
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