Watch Ehlers-Danlos episode on “Good Morning America” – Video Link
“Good Morning America” reported about Ehlers-Danlos on Friday, 11/29/2013. We are providing a link to Watch the VIDEO of the TV segment.
EDS awareness is one positive outcome of the tragic story about the Huber family’s false allegations of child abuse. Their daughter has been diagnosed with Ehlers-Danlos Syndrome.
Click here for this story about the Huber family’s false allegations of child abuse due to EDS.
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I am so glad more awareness is getting out there and I am glad this family didn’t give up. This is not an easy battle. I’ve been fighting for many years, I’ve seen many doctors in my life & had multiple surgeries and MANY things removed still I didn’t have answers until Sept 2012. I have dislocated fingers, toes that my husband had to “pop” back in and even my hips that I’ve struggled to put back into place.. I have cranial instability corrected with fusion with 2 of my own ribs and I cannot even do yoga or Pilates now and I’ve fractured my regenerated ribs. I am sure with the bruising, multiple rib fractures the doctors think I’ve been abused..this syndrome is a battle and now my 2 kids will be seeing a geneticist because they probably have this condition. More doctors and people need to be aware of EDS and how it impacts everyone’s life. There is no cure..
too bad I don’t watch TV…so many of these stories are popping up lately, I love some of the FB people that write the positive articles too! We need to have more people speaking out, younger people that are recently diagnosed…
Sharon, Thanks for your comment. We will try to get an internet link to the GMA program. We agree and post only positive articles on our site.
I find it so hopeful to have some mass attention drawn to EDS through national programs like GMA. I was diagnosed with EDS when I was 17 and multiple corrective surgeries for my knees had failed. This was 32 years ago. Back then, most doctors had not heard of EDS, much less the general public. It’s so encouraging to me that finally it is becoming known and we are starting to develop some understanding of the condition. I will be PVR’ing GMA that day.
Sharon, Thanks for your comment. We are also excited that EDS is getting wide spread awareness.
My sister that is now 67 has suffered with this since birth but was not diagnosis until she was about 55-56. She was seen by a pediatrician every six month for her entire childhood. There was not even a name for it then. She is rated a stage six and her most debilitating symptom is her eye sight. She is now legally blind and has been for many years. We could never identify anyone else in our family that has displayed similar symptoms. She has overcome many adversities and I am so proud of her and her outlook and discipline on a daily basis. I’m so happy attention is being paid to this syndrome as many people’s lives are affected. I have only really met one person that has this diagnosis but worked with someone whose niece (a 3 year old at the time) was diagnosed. I have many questions concerning my children’s and her sons chances of carrying the gene.
Rose Anne, Thank you for your comments. Our primary goal is EDS Awareness. If you would like to know more about our EDS Support groups or EDS awareness activities please email us at info@edsawareness.com God Bless. Deanna & John
Our story is identical to The Huber families. I am writing to you in need of your help and expertise. My family is living a nightmare at the moment. Our twins were removed from our custody in May due to “multiple unexplained fractures” and my husband and I have been accused of child abuse. We initially took our son in to see his pediatrician after his left arm was just hanging by his side without movement. She suspected nursemaids elbow and maneuvered his arm to try and place it back into place when he suddenly screamed out in pain. She then ordered an x ray which showed a spiral fracture. We were sent to a Boston hospital where more tests were done on him and his twin sister and we were told the results showed “multiple fractures in various stages of healing”. Since then the children have been placed in the care of family, my husband and I have jumped through hoops with the Department of Children and Families and gained back full time visitation with our children as long as a family member is in the home. There is a grand jury investigation open on potential charges. We are in desperate need of help from an expert dealing with conditions that are commonly mistaken for child abuse. We have reached out to local geneticists and have received no help. We know we did not abuse our children and believe there is an underlying condition. We have not been provided any medical records, X-rays, bone scans, etc from the hospital that diagnosed our children so it has been difficult for us to go elsewhere for a second opinion. Our hopes are that you may be able to help us with your expertise or be able to point us in the right direction either with a national contact or someone in our local area.
Mae Peter, please email me at bria.fracturedfamilies@gmail.com.
We’re trying to help families in similar situations. I’m not a doctor or an attorney but I’m a mom who went through hell trying to get answers. Myself, along with 2 other moms do what we can to help people struggling in this situation through our newly formed Fractured Families Foundation.
Prayers,
Bria Huber
Thank you for your comment. We look forward to the Katie show on 12/10/13 to discuss this topic further. We hope to post the replay on our site.
God Bless, John & Deanna