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| Subject | Date Asked | Expert |
| EDS professional help in British Columbia | 1/26/2012 | Barbara Uggen-Davis |
| Q: I was diagnosed with non-severe EDS (joint hypermobility and chronic pain from physical trauma) ... A: Sorry for the delay in getting back to you. I have emailed a friend with EDS in Canada who may be ... | ||
| is it normal | 1/21/2012 | DISABILITY DIANE |
| Q: stuffed animal, or my troll in my bag where ever i go I seem to have to bring either a doll ... A: You have a doll you carry...many people have other things they like to carry around. I see no harm ... | ||
| disabled pregnancy | 1/9/2012 | DISABILITY DIANE |
| Q: Me and my boyfriend are thinking of trying for a baby, but i have right sided hemiplegia and we were ... A: Sorry it has taken me so long to answer your question my computer had gone crazy for a bit. You ... | ||
| help | 12/9/2011 | DISABILITY DIANE |
| Q: like talking if they are talking. ANSWER: I would love to answer your question but I do not ... A: It is often difficult for a non disabled person to put themselves in your shoes for a bit. My way of ... | ||
| VEDS | 9/16/2011 | Barbara Uggen-Davis |
| Q: I am scared that I might have VEDS. I know you're not a doctor, but I was wondering if you were ... A: Your doctor can take the skin biopsy and ship it to the lab in Washington for testing. ... | ||
| VEDS | 9/15/2011 | Barbara Uggen-Davis |
| Q: I am scared that I might have VEDS. I know you're not a doctor, but I was wondering if you were ... A: Yes, I am familiar with VEDS and can often recognize the distinct facial features. However, facial ... | ||
| parking handycap | 9/8/2011 | DISABILITY DIANE |
| Q: does the law state if and how many spaces there should be i am in the state of tn. my wife went to a ... A: Local goverments often have their own rules for things like handicapped parking. Unfortunately you ... | ||
| older teen questions | 9/2/2011 | DISABILITY DIANE |
| Q: I have a visable disability but I am anxious to fit in. How do I get treated the same at ... A: University life can be difficult. Congratulations for taking on the hard work needed to make your ... | ||
| Group Housing for Mentally Disabled | 8/18/2011 | Jon Eriquezzo, MS |
| Q: Jon, My daughter is 18 and has a combination of mental illnesses.We have supported her in every ... A: Have you connected with the folks at Community Partners yet? Community Partners: Behavioral Health ... | ||
| Assistance in Illinois.. | 7/5/2011 | Jon Eriquezzo, MS |
| Q: I had brain surgery in Sept 2010 to remove what was biopsied as a grade 3 tumor and unforseen ... A: You should contact your local vocational rehabilitation agency. VRS provides services needed to ... | ||
| Volunteer Firefighter | 6/1/2011 | John Craig |
| Q: My husband is a volunteer firefighter and has been been for 42 years. About 7 1/2 years ago he was ... A: First off, does the volunteer fire company have any problems with how your husband performs his ... | ||
| Blindness | 3/23/2011 | John Craig |
| Q: I am doing a project in school. My group of four and I have to figure out a way to make it possible ... A: I like the concept. Yet what happens if the teacher or a student walks in front of the camera? What ... | ||
| Concerned Niece | 3/21/2011 | John Craig |
| Q: I am a nineteen year old and I have an Uncle named Norman who has Down syndrome. For the past forty ... A: WOW.....this one is tough! If you do accuse and you are wrong you will most likely get attitude from ... | ||
| Concerned Niece | 3/21/2011 | Margot RN BScN CGN |
| Q: I am a nineteen year old and I have an Uncle named Norman who has Down syndrome. For the past forty ... A: Wow, this is a difficult and disturbing situation. I can certainly understand that you need to be ... | ||
| what is and is not a disabilty | 3/10/2011 | Jon Eriquezzo, MS |
| Q: My 80-year-old father had back surgery last year, and he can't move around very well. The prognosis ... A: That's a good question. The definition really depends on what benefit you are looking to secure. ... | ||
| inspiration | 3/10/2011 | John Craig |
| Q: Mr. Craig, your story is so inspiring. How has your way of dealing with naysayers, misguided and ... A: Good question. I have a 21 year old daughter that experienced a bit of what I went through growing ... | ||
| Symptoms & Diagnosis | 3/1/2011 | Barbara Uggen-Davis |
| Q: I happened upon a description of Ehlers-Danlos last week and was struck by how many of the symptoms ... A: Lisa, You certainly have enough of the traditional EDS signs/symptoms to make it worth ... | ||
| Problem walking down the stairs... | 2/20/2011 | Margot RN BScN CGN |
| Q: I have a hard time walking down the stairs and curb. I didnt have this before until I was 8-9. I ... A: You really need to be examined by a doctor, and maybe even a Neurologist. It sounds to me like a ... | ||
| My hands and feets shivers of cold | 2/15/2011 | Barbara Uggen-Davis |
| Q: Peace be upon you O, brother barbara I am suffering from chilliness on my hands and feets.Whenever ... A: My expertise is in specifically Ehlers-Danlos Syndrome, a connective tissue disorder. Cold ... | ||
| EDS Doc in Phoenix area | 2/14/2011 | Barbara Uggen-Davis |
| Q: I'm 42 and have recently been diagnosed with EDS. What a relief to finally know what all my ... A: The problem with EDS is that there aren't really many "experts" or specialists in EDS. There are a ... | ||
| EDS VASCULAR medication | 2/3/2011 | Barbara Uggen-Davis |
| Q: This is a question I am embarrased to ask but am having serious problems. I have a confirmed ... A: Pain management and EDS is one of the toughest challenges. Finding the balance between pain meds ... | ||
| A 2 yr. old that isn't able to walk on his own yet. | 1/31/2011 | John Craig |
| Q: I am sorry, this is my first time on this website. Something is bothering me, and has actually been ... A: I am a bit confused. The child can cruise furniture, yet he isn't able to pull himself from a sit to ... | ||
| can some one with | 1/29/2011 | John Craig |
| Q: can someone with down syndome get married and have kids? and can some one with a learning ... A: As far as I know there are no laws against someone with downs syndrome having a child. However, ... | ||
| Any Info on microform cleft | 1/23/2011 | John Craig |
| Q: Read you were born with a cleft lip. I too was born with one. Its specifically a microform cleft ... A: I have a cleft palate with no visible structural damage. Mine is a pin hole sized opening in the ... | ||
| Cleft and Orthodontic Care | 1/17/2011 | John Craig |
| Q: My son was born with a cleft lip and palate. He is now 9yrs old and we are beginning orthodontic ... A: Actually in your sons case it sounds like it could be a health issue if the teethe are growing into ... | ||
| SSDI | 1/5/2011 | John Craig |
| Q: I was paralyzed due to damage to my upper neck area (around the 3rd disc) almost 30 years ago in HS ... A: The first thing I would ask you is if you have all of this documented. If the answer is yes , then I ... | ||
| Physical Therapy and EDS | 12/30/2010 | Barbara Uggen-Davis |
| Q: I have extreme pain in my neck, shoulder, left elbow, knees and tail bone. I have EDS and wear a ... A: Physical therapy for EDS is one of those things that can be really beneficial if done right, or ... | ||
| Help with my medications | 12/24/2010 | John Craig |
| Q: My name is Susan. I have been unemployed for several months. I have Lupus. I am on several ... A: Susan, I have seen advertisements on television for either Squibb or Pfizer to help with medication ... | ||
| Help with my medications | 12/24/2010 | Barbara Uggen-Davis |
| Q: My name is Susan. I have been unemployed for several months. I have Lupus. I am on several ... A: Susan, This is outside my area of expertise, but there are some options I know of. 1) Check with ... | ||
| Help with my medications | 12/24/2010 | Jon Eriquezzo, MS |
| Q: My name is Susan. I have been unemployed for several months. I have Lupus. I am on several ... A: There are two things that you can try: 1. Go to your city/town hall and ask them for help paying ... | ||
| job help for disabled | 11/20/2010 | Jon Eriquezzo, MS |
| Q: I have chronic shoulder pain from shoulder injuries/surgeries and also have severe sleep apnea. I ... A: Sorry for the delay in answering. You may want to ask Vocational Rehab to assist. State vocational ... | ||
| eds | 11/2/2010 | Barbara Uggen-Davis |
| Q: do many people with eds have fatigue??? if so, why?? A: Yes, fatigue and even chronic fatigue syndrome have been linked with EDS. This study was actually ... | ||
| Hey again | 10/3/2010 | Barbara Uggen-Davis |
| Q: I asked you a question 3+ months ago I think about EDS. You mentioned Sticklers, going to see my ... A: I'm not a disability expert, so my best advice would be to consult an attorney that handles ... | ||
| WHAT'S WRONG | 9/19/2010 | Barbara Uggen-Davis |
| Q: I was wondering would you please tell me: can a person feel depressed in a wheelchair? Thanks A: My area of expertise is Ehlers-Danlos Syndrome, not disabilities in general. However, with respect ... | ||
| Mis-diagnosed once, don't want it to happen again | 9/5/2010 | Barbara Uggen-Davis |
| Q: I went to a genetic doc in 2008 to see if I had this disorder. She tested me on the Beighton Scale ... A: I've not read about body temp being connected to EDS, but I know MANY people with EDS, including me, ... | ||
| neighbor with disability- long island, NY | 9/4/2010 | Jon Eriquezzo, MS |
| Q: My neighbor is 60 years old. He had a stroke about 10 years ago and is in a wheelchair. His wife ... A: That's a very concerning situation. I'm really not sure how the paramedics or emergency room ... | ||
| Mis-diagnosed once, don't want it to happen again | 8/24/2010 | Barbara Uggen-Davis |
| Q: I went to a genetic doc in 2008 to see if I had this disorder. She tested me on the Beighton Scale ... A: Sorry for the delay in getting back to you. This is a pretty long question and I want to give it a ... | ||
| EDS | 8/11/2010 | Barbara Uggen-Davis |
| Q: Damn was surprised to find this under disabilities. Been having a hard time getting on disability ... A: Russell, Your story certainly fits the pattern of most people with EDS. I'm not a doctor, so I ... | ||
| Ehlers Danlos | 5/21/2010 | Barbara Uggen-Davis |
| Q: I have a 6 year old just dx with this. How serious is it and what do I need to know. How bad will ... A: Lisa, First, I must preface my answer by saying I am not a doctor and cannot give medical advice. ... | ||
| massage modalities for children with EDS | 5/3/2010 | Barbara Uggen-Davis |
| Q: Are there any massage techniques I can use on my 3 yr. old daughter who has EDS? She doesn't have ... A: Christina, My father is a licensed massage practitioner and also has EDS. Since he is a far better ... | ||
Living With Disabilities
Answers by Expert:
Barbara Uggen-Davis
Top Expert on this page
Expertise
I can answer questions related to coping with Ehlers Danlos Syndrome including: bracing, symptoms, alternative therapies, support groups, etc. If your question does not relate to Ehlers-Danlos Syndrome, I am not able to answer you.
Experience
Although I am not a doctor, I have extensive experience in dealing with EDS from personal experience and from being actively involved in EDS Support and Education groups since 1994.
Organizations
EDS Today, Canadian Ehlers-Danlos Association, UK EDS Support Group.
Publications
I was both a writer and editor for EDS Today for 10 years.
Education/Credentials
I have a BA in Business Administration/Accounting and an MBA in Business Management/Information Systems. I work in the medical field with 12 years experience in over-the-counter bracing and support products. In 2007, I joined a medical technology company.
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