Day 16: I can't help but feel so scared because, during my daily studying of this disease, I found some research regarding Mucha-Habermann's disease and how it has a mortality rate of 20%... Oh, dear God! I need faith to come to me. I need to have faith and know that my son's PLEVA will not reach that state. What else can I do? One thing is for sure I'm starting to measure his lesions. Please, if you can, pray so that this never happens to my son or to anyone out there.
The findings come from the National Institute of Health - Office of rare disease research. They state that PLEVA is the initial state of Febrile ulceronecrotic Mucha-Habermann disease (FUMHD). When the lesions grow larger than 2-5mm (PLEVA) they become large destructive ulcers that make you lose your skin. How awful! I cannot imagine this getting that bad! It states that all reported deaths were in adults and children tend to have a better prognosis - WHAT does this mean??? I am calling places. I need answers. This is so devastating. Just when we were feeling that we were somehow conquering this battle, this appears. Together with two new tiny lesions on my son's torso. I hope he doesn't get any more. I truly thought they were going away. Hopefully, it's just a small flare-up before fading away.
Another thing that I have learned is that this disease is for life. My son will eventually get better from the lesions but as fast or as slow as they appear they disappear and stay dormant for years only to appear when he is in his 20s or 30s.
The findings come from the National Institute of Health - Office of rare disease research. They state that PLEVA is the initial state of Febrile ulceronecrotic Mucha-Habermann disease (FUMHD). When the lesions grow larger than 2-5mm (PLEVA) they become large destructive ulcers that make you lose your skin. How awful! I cannot imagine this getting that bad! It states that all reported deaths were in adults and children tend to have a better prognosis - WHAT does this mean??? I am calling places. I need answers. This is so devastating. Just when we were feeling that we were somehow conquering this battle, this appears. Together with two new tiny lesions on my son's torso. I hope he doesn't get any more. I truly thought they were going away. Hopefully, it's just a small flare-up before fading away.
Another thing that I have learned is that this disease is for life. My son will eventually get better from the lesions but as fast or as slow as they appear they disappear and stay dormant for years only to appear when he is in his 20s or 30s.
This reminds me of Job (from the Bible). Job was struck with "a malignant boil" from head to foot. Its very encouraging that after all of the trials and tribulation that Job endured stayed faithful to God and his integrity never waivered. Its a test Divanyw, don't let this waiver your faith... God will always help you. There is a lesson somewhere, its horrible that you are having to deal with this. He will help you deal with the stress and anxiety. I will continue to pray for you and your family! Love, :)dee
ReplyDeleteThank you so much for these encouraging words. I know my faith can't break. Infinite thanks for your prayers they really do work.
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