Becca_Anne Posted March 16, 2008 Share Posted March 16, 2008 Last week I was tentitively diagnosed with a very rare skin blistering autoimmune disorder. We are still sorting out the exact type but it is most likely Bullous Pemphigoid I started posting about this in my blog, My Journal which up to now I've only really shared with my Best RL friend in NH, and my mom. I feel it's time to share it with all of you as well. I origionally used it as a private place to sort out my career path ideas, and store info I wanted to keep handy. But it sort of evolved into a bit more over the last 3 years, and now I'm going to record my battle against this autoimmune disease and use it to help others in the future. I am thinking of writing a book about autoimmune disorders and autism. I have two sons and a spouse on the autism spectrum. Mothers of children on the spectrum who have autoimmune disorders are 9 times more likely to have a child on the spectrum. I really feel there is a link there that needs to be explored. As for my specific autoimmune disorder I plan to include an extensive section on Pemphigus/Pemphigoid disorders. There is very little out there for the layperson and I feel called to remedy that. If anything good can come out of this nightmare I want to do something to help other people who are suffering from this, especially the ones who are young. Even children have gotten this skin condition and I cannot imagine their suffering. I really feel in my heart I need to do something to make a difference for them. A close online friend of mine recently fought and beat breast cancer and started a foundation called The Breast Cancer Sisterhood At some point I'd like to follow my close online friend Debbie's example and start a foundation to do research and help those with autoimmune diseases and autism. I will be picking your brains for inspiration and probably asking for your support a lot through this process! Link to comment
Mother Posted March 16, 2008 Share Posted March 16, 2008 AH Becca Anne, that is a wonderful thing to do. I know there will be people who will greatly appreciate having a place to go where they can learn that they are not alone in their diseases. Bless you! Link to comment
Jeepers Posted March 16, 2008 Share Posted March 16, 2008 Thanks for the link. I've got you bookmarked. You have my support in any way I can give it. Even if it's just listening and saying a few extra prayers. Link to comment
Granny Posted March 16, 2008 Share Posted March 16, 2008 Can't imagine how painful those blisters must be . Thoughts and prayers from here also. Great blog! I was wondering if the vet wrap could be also be used as bandage cover. Used that for ds arm and when edge would get to stretchy after several wraps trimmed small strip off ends for a few more uses. Plus came in different colors and seemed to remind others not to bump the arm or me to notice not wrapped and "nag". LOL. Was lots cheaper to buy at farm store/vets than first aid section/people. Not sure by around $1.20 a roll? DGS is austic, DM was autoimmune so looking forward to the book as well as the start of nursing school. Keep up the good work!! (((BeccaAnne))) Link to comment
Granny Posted March 16, 2008 Share Posted March 16, 2008 I forgot to mention federal vaccine injury fund just recently recognized autism as a claim due to relationship of some shots triggering too much immune response, or something like that. Link to comment
MomM Posted March 16, 2008 Share Posted March 16, 2008 Thank you for your blog. I've bookmarked it. You have great ideas. Keep at it. Link to comment
Becca_Anne Posted March 16, 2008 Author Share Posted March 16, 2008 Thank You everyone! Link to comment
JCK88 Posted March 16, 2008 Share Posted March 16, 2008 Becca Anne, Have you done any research into how diet affects immune diseases and autism? There is a lot of anecdotal evidence out there that corn can affect autistic kids and taking them off of it improves their condition. I think there is a connection between hormones, food allergies, and autoimmune diseases that has not been researched enough. Anyway, I think you are completely qualified to write about this subject in a meaningful way that will not only help medical researchers but will surely be a boon to those who also have the same disease. Keep at it! Link to comment
Becca_Anne Posted March 17, 2008 Author Share Posted March 17, 2008 Thank you for the encouragement Judy I am actually feeling really empowered by the thought of helping others and helping science. I am going to take the Immunology class at some point just because I want to understand it better. The credits can't hurt either Apparently the professor has a skin disorder as well, not sure what type but I had planned to speak with her about it. My A&P lab teacher gave her my contact info. Yes we have a lot of food allergy issues at my house. I already had cut corn out of my own diet since it's in the grass family and I'm VERY allergic to grass and used to break out in a rash every time I sat on it and my bare skin touched it. Wow, I just realized that could be connected!! I'm going to mention it to my dermatologist and the allergist for sure! As far as the autism and diet I looked into the whole GFCF thing, and couldn't follow it at the time. I was overwhelmed just having moved and my kids newly diagnosed and fighting to get them the services they needed in school. I am going to have to revisit that now. I will be getting all the kids tested for food allergies with a blood draw. It's better than the skin test for how your digestion reacts to allergens apparently. My DH recently had his blood tested and foudn out he is allergic to milk and lamb of all things. Nothing else though so he just avoids milk products and it's helped him immensely. One of my sons tested negative to food allergies. I suspect my other AS son is allergic to milk, as he throws up if I accidently put a lot of milk in anything he eats, so I don't give him dairy either. My father is allergic to garlic, blueberries, green beans, almonds, and a few others I can't remember. Also my DH's mom has hypothyroidism, and his sister does as well so I'll be keeping tabs on the kids for that. Lots and lots of research in my future! Link to comment
MomM Posted March 17, 2008 Share Posted March 17, 2008 Becca, when our DD took her 4 1/2 yo son off dairy, he started to talk. He is diagnosed with autism,and was severly speech delayed. He is not talking at his age level yet, but is much improved. We are delighted and very encouraged. He is teaching himself to read and spell,and is very computer literate. He is amazing. Did your sons having any speech delays? Link to comment
Becca_Anne Posted March 17, 2008 Author Share Posted March 17, 2008 No speech delays, both were early talkers. My younger boy had speech articulation issues. I didn't know a child could talk and be autistic before my children were diagnosed with Aspergers Syndrome. They weren't diagnosed until they were older, in the case of my older boy he was diagnosed in 3rd grade, and the younger one in K in the same year. My boys are fortunately very high functioning. In fact just this month my 13 yr old will be starting his last mainstream class and be fully mainstreamed A year ago I would not have thought that possible. I have been very lucky, he has pretty much "grown out of it" athough I still know there are big challenges there. My younger son is in a special ed self contained classroom and mainstreams PE and Music and Math. Since I am also married to a man on the spectrum I can tell you the growth continues past childhood. My DH had come so far in the 17 yrs we have been married. He is now caring for me through my illness! Pretty amazing for a guy who couldn't even tell when I was mad or sad without me telling him when we got married. Back then I'd never heard of Asperger's Syndrome, he was just a guy who liked me for who I was, and didn't care that I liked to talk about science. Our very first conversation was about nanotechnology LOL. Despite all the challenges we are very well matched Link to comment
MomM Posted March 17, 2008 Share Posted March 17, 2008 Thank you Becca! Will pass this on to my DD. Link to comment
zzelle Posted March 17, 2008 Share Posted March 17, 2008 thank you for the info and keep up the good work Link to comment
John & Joan of Ark Posted March 18, 2008 Share Posted March 18, 2008 Ouch I hated the blood part of allergy testing. We found a good Dr. who is the best muscle tester ever so we're trying to go gluten free, corn free and refined sugar free. Wish brown rice would store for longer periods of time..... liking spelt so far. Link to comment
Becca_Anne Posted March 18, 2008 Author Share Posted March 18, 2008 I already had a billion pricks with the skin test, one blood draw will be a snap in comparison LOL. Those needles hurt! Once I'm under control I hope to get the ok to do allergy shots. I don't know if that is an option for me though, it might provoke a flare up of this disease. If I can't I'll just keep doing what ever seems to help. The whole houes air filter system got installed this morning and my house smells so CLEAN now! As for brown rice- freeze it in those vacuum sealed bags! I have some in my freezer that is about a year old and it still tastes fine. Link to comment
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