Ehlers Danlos Syndrome Family Contributions: Did you guys see American Ninja Warrior? Michael S...

Redirect to EDSFC for latest news and insights:

Ehlers Danlos Syndrome Family Contributions: Did you guys see American Ninja Warrior? Michael S...: Did you guys see American Ninja Warrior? Michael Stranger's wife said she has Ehlers Danlos Syndrome and that for her it is a terminal i...

Redirect to find out what is being talked about in the Ehlers Danlos Support Groups this June of 2015 and learn what you can do do about it! Click the link above.

Glaucoma Time!

I was diagnosed with preglaucoma which has now, "crossed the border" as my doctor says. My doctor has earned an OD after her name. She is known for traveling to Guatemala for purposes of caring for glaucoma patients over seas. My eye doctor has been monitoring my glaucoma for years now. My optic nerves have always been white. I found out I didn't do so well on visual fields twice in a row. She decided to put me on drops if my pressures were not down in the teens. I had an eye caught at a pressure of 19 before and another time 23. I had hope that they would be in the teens this time. They were both 21. She put me on Timolol to hopefully slow progress of further vision loss. Again, I am 32 years old.

Ehlers Danlos Syndrome and Glaucoma. 

Please subscribe and share!

I need a geneticist!!

I know Doctor Google can be very harmful for us and it is best to stay away from researching too much but I came across this article and it fit me so well that I can't help but wonder if I have type IV Ehlers Danlos Syndrome personally instead. My factor VIII was found to be low and borderline Von WIllebrand Disease was diagnosed. I have been having problems with pneumothorax as well. I am very nervous that my fundraiser wont take off and that I wouldn't be able to afford my child daycare and travel expenses to get myself properly checked out. I know I need to place my faith in the universe and believe that God has a plan no matter if I am comfortable with it or not. I could really use prayers today.

Check out the article that ruffled my feathers today here.

A special shout out and thank you to my supporters! You mean so much! You give me HOPE!

Ehlers Danlos Syndrome The Story of Pain

My Medical Journey Update

The goal was to get me into see a care team but we learned that Cincinnati Children's Hospital is booked until January. I am being sent to a round of different specialist doctors in the meantime. I will be taking the trip to Carmel, Indiana tomorrow and look forward to updating my supporters as I receive information. I also have an appointment with Methodist Hospital in Indianapolis, Indiana Scheduled for the afternoon of May 12th to address my clotting disorder. I have been to three different hematologists in regard to my opposing bleeding disorder. I will be seeing a vascular surgeon for this evaluation. 

I can't thank my supporters enough for being here for me during this journey! I am blessed and they give me hope!

Ehlers Danlos Family Contributions

It is time. 

One blog featuring families in need who have Ehlers Danlos Syndrome has been created. The mission of the blog is to provide one stop to find a way to donate to the various nonprofit centers for research to find a cure as well as individual families who need help.

Blog Preview:

"1. Lack of information from doctors world wide. People with Ehlers Danlos Syndrome usually travel many miles to seek treatment due to scarce familiarity with the condition.


2. Systemic problems occur. Very few people or none with Ehlers Danlos Syndrome have no other medical problems diagnosed. The other diagnosis' are often but not always secondary diagnosis to the Ehlers Danlos Syndrome.



3. Often people with Ehlers Danlos Syndrome are minimized. They are told the problems, being so many, are all in their head. Many have been diagnosed with psychiatric disorders that do not fit them.



4. People with the Vascular type of Ehlers Danlos Syndrome have a lower life expectancy. People with any type are at risk for life threatening complications."

The hope is that for every $20.00 donated to the cure research that $1.00 is donated to one of the families currently struggling with this debilitating systemic congenital condition to aid them to a better quality of life. Such families are found along the right side of the blog.

This community really needs your help!

Click here to view: EDSFC

More than the Beighton Scale/Score

Other signs of connective tissue disorder and hypermobility include the following:

Metenier's sign

Reverse-Namaskar

There are many more signs. EDSers will do this stuff as kids as "party tricks" and yes we realize nobody else seems to 

be able to do it but we dont necessarily see ourselves as different. Gym class shows many people doing things that 

others can not for instance. We were born this way and have to be told that it is different within the population norms.

Genetics Ehlers Danlos Syndrome and Me

All of the laboratory testing for 23andMe is done in a CLIA-certified, CAP-accredited laboratory in the United States.

I had my DNA ran by 23andme.com using saliva testing. I took the results and ran them through livewello. These are my results based on genes presumed to be linked to Ehlers Danlos Syndrome (note: SNPs are all collectively found on my chip for each gene. There are more but they aren't showing on my chip at this time.)

1

2

3

My diagnosis is classical familial hypermobility type of Ehlers Danlos Syndrome by my rheumatologist. I have not seen a geneticist. I do not have insurance to go see one or seek treatment at this time. Thanks for reading! Please subscribe and share!