EDS Alert Newsletter No. 16

This is our monthly round-up of information about Ehlers-Danlos Syndrome (EDS). If there is not enough material to create a newsletter, the posts may end up occurring quarterly. For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

Blogs/Online Diaries
Blog: 50 Ways To Encourage A Chronically Ill Friend

Blog: EDS – A Great Loss In My Life

Blog: EDS Aches

Blog: EDS Diagnosis explains all my sports injuries

Blog: EDS Related Items To Buy At CafePress

Blog: Jaw Pain & EDS

Blog: Joy in Life through Pain Management

Blog: Just diagnosed with Ehlers Danlos Syndrome Type III Benign, Deploying in September.

Disability
Disability: Tapping Into IRAs Early?(-)

Medical

Medical: EDS Today No. 12 (Fall-Winter 2005): Coping With EDS, Lead article: Clinical Report: Tenascin-X deficiency in autosomal recessive Ehlers-Danlos syndrome

Misc/News
Misc: prescription glasses for under $30
News: UnitedHealthCare Offers Grants For Childrent’s HealthCare

We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from medical articles that require subscriptions or paid memberships to access.

Disability: Tapping Into IRAs Early?

Question from a finance blog:
I have AIDS and have been on disability for many years. I have $20,000 in an IRA and want to use it for some facial surgery, as the disease and the years have not been flattering. I get disability income and Social Security benefits annually, but usually owe very little tax. If I pull the money out of my IRA, am I subject to the 10 percent penalty?

Answer here.

News: United HealthCare To Offer Grants For Children’s Healthcare

the qualification guidelines are restrictive, but they will offer up to $5000. More here

EDS Alert Newsletter No. 15

This is our monthly round-up of information about Ehlers-Danlos Syndrome (EDS). If there is not enough material to create a newsletter, the posts may end up occurring quarterly. For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

Blogs/Online Diaries
Blog: Benign Joint Hypermobility Syndrome

Blog: EDS & Pain Relief

Blog: Friend Just Diagnosed With Vascular EDS

Blog: Joint Hypermobility Syndrome: Getting Better

Blog: Living with Ehlers-Danlos.(-)

Blog: New to this (Family With EDS)

Blog: Ongoing Challenges To Find An MD Willing To Treat EDS

Blog: Sign The House MD EDS Petition

Blog: What Is EDS

Blog: Wheelchair Rentals In The UK

Disability
Disability: Big Win for New York ERISA Disability Claim Denial Lawyer regarding Pre-existing Conditions

Disability: Long Term Care Insurance Claims: LTD Denial Redux?

Medical
Medical: EDS Today No. 11 (Spring-Summer 2005): Pregnancy, Lead article: Labor Analgesia

Medical: Muscle Spasms/ Trigger Points – an inevitable complication of joint hypermobility syndrome

News
News: Cartoonist Supports Sufferers of Life Threatening Disease (Marfan)

News: Often out of joint, but totally adjusted READER ESSAY MY HEALTH(-)

Video
Video: Overview Of EDS From ‘Medical Incredible’ TV Show(-)

We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from medical articles that require subscriptions or paid memberships to access.

Video: Overview Of EDS From “Medical Incredible” TV Show

You can download your own copy at the EDNF site

This 5 min segement was aired a few yrs ago. One thing to note: while rigorous exercise can help some people with EDS, it cannot stave off the overall wear and tear on the body. Nor can it prevent daily injuries or crippling pain. Unfortunately, some MDs ignore this and push excercise as the ‘cure’ without looking at the overall situation.

EDS Alert Newsletter No. 14

This is our monthly round-up of information about Ehlers-Danlos Syndrome (EDS). If there is not enough material to create a newsletter, the posts may end up occurring quarterly. For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

Blogs/Online Diaries

Blog: EDS & Surgery: I Have Questions

Blog: EDS Awareness TShirt Slogans

Blog: Just Diagnosed With EDS

Blog: Looking For Work While Disabled: Part 3 – The Jobs Broker(-)

Blog: Pain Med Challenges

Blog: Wins for the week! « Illuminating Spirit(-)

Disability
Disability: Dealing with Disability: Must-Have Documents Prevent Chaos

Medical

+Medical: EDS Today Newsletter No 10 (Fall 2004) – Lead articles: Driving & EDS/ Connective tissue disorders with spontaneous spinal cerebrospinal fluid leaks
+Medical: Hypermobility and Myofascial pain syndromes and their evaluation(-)

 

News
+News: Battling the Bulge
+News: Promising Research For Marfan Patients

+ News: Tall, lanky sufferers of Marfan syndrome meet / Conference held on disorder linked to Lincoln, bin Laden(-)

+News: Rep. Vukmir’s staff to EDS Patient

 

We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from medical articles that require subscriptions or paid memberships to access.

EDS Newsletter No. 13

This is our monthly round-up of information about Ehlers-Danlos Syndrome (EDS). If there is not enough material to create a newsletter, the posts may end up occurring quarterly. For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

Disability
+Disability: Big Win for New York ERISA Disability Claim Denial Lawyer regarding Pre-existing Conditions: The New York Disability Law Blog
+Disability: Cost of Living Benefits and Disability Benefits
+Disability: Financial Help

Legal
+Legal: The Latest Word Out of the 1^st Circuit on Pre-existing Conditions, Long Term Disability Benefits, and Uncertainty Over the Standard of Review

+Legal: Time to Reset the Clocks, at Least When It Comes to Calculating Interest Awards in ERISA Cases

Medical
+Medical: EDS Today Newsletter No 9 (Spring 2004) – Lead article: Having Children With EDS

+Medical: Ehlers-Danlos syndrome – OhioHealth – Good Overview With Genetic Info +Medical: Learning to ‘Live With’ Chronic Pain (free, registration required)

News
+News: Stanford University School of Medicine to Host 23rd Annual National Marfan Foundation Conference, July 12-15, 2007

We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from medical articles that require subscriptions or paid memberships to access.

Disability: Financial Assistance

Financial Assistance
Catholic Charities with financial assistnace and their food pantry.
http://www.catholic charitiesusa. org

United Methodist Foundation, food, clothing, utilities or phone or
housing assistance
http://umf-nc. org

Financial Assistance Resource
Has directory of Foundations in US that Provide Individual Grants
under “General Welfare Section” of book. Book can be found in your
local library
http://foundationce nter.org/

Modest Needs
http://www.modestne eds.org

Angel Food Ministries
a program that allows people to buy a $60 box of food for $25 – the selections look good and they also offer a lot of meat (which is in short supply at most food banks). There are 19 participating states.
So if you know of someone who needs a little extra food or runs short every month, please send them here: http://angelfoodministries.com/menu.php
PS. they also accept food stamps.