The Government has the ability to bypass the cost benefit analysis etc for these medications and approve them without even a TGA application through the life saving drugs program. If the medication only costs about 1 mil per year, this will be no barrier to this. For example Zolgensma got in through this back door at a cost of just under $2.6 mil
My first born had staph right after birth so he was misdiagnosed with just having staph so he was given antibiotics. We got rid of the staph but the antibiotics gave him terrible candedae and the blisters kept happening that we thought were caused by staph. We were unable to even find out what he had until my third child was born with the same symptoms as my first born. The believe she has one of the less extreme forms of EB which means my son has it as well. She still has some tests that need to be done and then we are having all the same stuff done for our first born. We have been treating my first borns EB essentially by ourselves for over three years with only help when he still had staph. We stopped taking him to doctors because it wasnt helping ajd they didnt know what was going on and just kept having us do things that were pointless in the end. We learned all on our own that the blisters will keep getting bigger until the burst or are drained so we now always drain any blister that gets above a certain size. Sometimes they go away on their own which is why we dont simply drain every single one and we have a set maximum size limit. The early on staph and candedae if i spelled that correct... fungus caused him to be really itchy and the scratching is primarily what causes him to blister. So he got a rough start and it set us back from the get go.
Poor little darling 😢 I don't know if the inflammation is internal too but pure aloe vera juice helped my esophagus, for another condition. It might help with EB too...
The blistering is unfortunately internal too, yes. Jacob has a peg in his belly button for feeding and meds. While this new medication is super useful, it is only for external wounds although we are very hopeful that it can be adapted and built upon to be applied to internal wounds too. This is actually being researched but these things take a long time. That’s an interesting tip about the aloe vera!
The Government has the ability to bypass the cost benefit analysis etc for these medications and approve them without even a TGA application through the life saving drugs program. If the medication only costs about 1 mil per year, this will be no barrier to this. For example Zolgensma got in through this back door at a cost of just under $2.6 mil
My first born had staph right after birth so he was misdiagnosed with just having staph so he was given antibiotics. We got rid of the staph but the antibiotics gave him terrible candedae and the blisters kept happening that we thought were caused by staph. We were unable to even find out what he had until my third child was born with the same symptoms as my first born. The believe she has one of the less extreme forms of EB which means my son has it as well. She still has some tests that need to be done and then we are having all the same stuff done for our first born. We have been treating my first borns EB essentially by ourselves for over three years with only help when he still had staph. We stopped taking him to doctors because it wasnt helping ajd they didnt know what was going on and just kept having us do things that were pointless in the end. We learned all on our own that the blisters will keep getting bigger until the burst or are drained so we now always drain any blister that gets above a certain size. Sometimes they go away on their own which is why we dont simply drain every single one and we have a set maximum size limit. The early on staph and candedae if i spelled that correct... fungus caused him to be really itchy and the scratching is primarily what causes him to blister. So he got a rough start and it set us back from the get go.
Poor little darling 😢 I don't know if the inflammation is internal too but pure aloe vera juice helped my esophagus, for another condition. It might help with EB too...
The blistering is unfortunately internal too, yes. Jacob has a peg in his belly button for feeding and meds. While this new medication is super useful, it is only for external wounds although we are very hopeful that it can be adapted and built upon to be applied to internal wounds too. This is actually being researched but these things take a long time. That’s an interesting tip about the aloe vera!
@@Elyse27 He's a very brave little boy, I hope he gets the medication he needs, soon. ❤️
I too have eb (simplex) which is no where near as horrific as this . Bless him