Been having those nagging aching pains here and there…… for years now and always said “Oh, it’ll go away” and it never does? Those are signs to you – whether minor problems or serious problems that could potentially turn tragic if continually left untreated. Let’s talk about some simple, common sense approaches to taking back control of your health!
Welcome everyone to youempoweryourhealth.com! This blog is to try and help educate people on all the different diseases, medical problems – in layman’s terms – terms that YOU can understand. It’s time to get excited about YOUR body, and when to seek medical attention. I’m here to hopefully encourage you to not be ‘afraid’ to face that ongoing pain or symptom you’ve been having. I’d like to share resources that may be available right in your own community, that you may not be aware of. Whether you have health insurance or no health insurance, you CAN get quality, reliable care for your medical condition and lead a healthy, active productive life.
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You Empower Your Health! 
Mrs Johnson, I need your help. My fiance has RD Epidermolysis Bolosa. She is 45 years old. On February 14th of this year she was rushed to one of the top hospitals in Boston. It Appears after 45 years of fighting, her body is no longer healing. She is running fevers of 102.9 every other day. She now has a feeding tube in her chest to get the optimal amount of protein she needs to heal. As great as this hospital is, they have little to no experience treating EB. It is becoming painfully obvious. A month ago they started talking to me about after life plans. Then Lori made an incredible turn around only to be back at to where she was a month ago. I am reaching out to you because you are the only one in the US that has lived as long as you have with EB. at least the only one I can find on the web. My question is there anyone I can call. Such as a Dr. or a hospital that specializes in treating EB. Lori is a fighter. But she seems to be losing her fight. I know she has more left to offer this world and her time is not now. I just need someone to believe what I believe and not give up on her. The medical community in our area are just scratching their heads and can not figure out how to help her. Any advice from you no matter how small, would be forever appreciated. She calls me her superman and she is my butterfly. I am not ready to let her fly away.
Michael Larinaitis
Thank you so much for writing to me. Lori sounds like a strong, courageous, wonderful person who I would LOVE to get the opportunity to meet one day soon! There seems to be an incredible love you guys have for each other.
I am not sure how familiar you are with the Debra organization – the organization that specializes in assisting all with epidermolysis bullosa. I can refer you and Lori to Debra’s acting EB nurse educator, Shawn Tavani, (who I’m familiar with her here in the Atlanta, Ga area). Mrs. Tavani can be reached at 212-868-1573 or (866) DEBRA76 (866-332-7276) Mon.-Fri., 9:00 a.m. – 5:00 p.m. EST.
The doctors that I personally know with EB experience (this is just MY experience) is my dermatologists here at Emory University Hospital in Atlanta, Georgia. Dr. Mary Spraker is VERY familiar with all types of EB, only thing, she is a pediatric dermatologist, but on occasion, she will still see adult patients with EB. I have seen Dr. Spraker off and on for approximately 25 years! Her colleague, Dr. Jack Arbiser, also at Emory is very familiar with EB as well and treats adults (myself included).
Below I will also send you a link to find doctors in your area who are supposedly familiar with EB: http://www.lifescript.com/doctor-directory/condition/e-epidermolysis-bullosa-ma.aspx
There is also a clinic that specializes and do clinical trials for patients with EB in North Carolina, which is the University of North Carolina Chapel Hill.
Please let me know if any of this information is useful to you and your ‘butterfly’, Lori. Thank you for sharing your story with me. I will be praying for Lori, and continued strength for you.
Thank you for being her superman!
You may call me as well if you need to at 678-773-7656 after 5 p.m. EST
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