About Alexa:

Alexa Simmons was a 22 year old woman from Colorado who lived despite all that Ehlers-Danlos Syndrome threw at her. She was a friend, a daughter, a sister and a zebra. She will be greatly missed and will always be greatly loved. 

She is survived by her mother, father and sister as well as maternal grandmother and grandfather and parternl grandmother and an enormous number of friends.  She did so many wonderful and thoughtful things for so many aflicted with EDS and other diseases around the entire globe -- speaking as her dad ... I am not sure whether I will ever fill the hole in my heart -- but I will try as she would have wanted all of us to carry on -- best of love to Alexa's relatives, friends and all she came in contact with.  She will continue to live on in all of us for the rest of our lives.  We all love you -- sweet Lexa Lou!

Her memorial page is at: www.facebook.com/pages/Alexa-Simmonss-Memorial-Page/171124806305002

If you want to read Alexa's story in her own words - go to http://jottify.com/works/being/

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.

In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names: the arthrochalasia type, the classic type, the dermatosparaxis type, the hypermobility type, the kyphoscoliosis type, and the vascular type. Other forms of the condition may exist, but they have been reported only in single families or are not well characterized.

Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the skin, features vary by type. An unusually large range of joint movement (hypermobility) occurs with most forms of Ehlers-Danlos syndrome, particularly the hypermobility type. Infants with hypermobile joints often appear to have weak muscle tone, which can delay the development of motor skills such as sitting, standing, and walking. The loose joints are unstable and prone to dislocation, chronic pain, and early-onset arthritis. Dislocations involving both hips are a characteristic finding in infants with the arthrochalasia type of Ehlers-Danlos syndrome.

Many people with Ehlers-Danlos syndrome have soft, velvety skin that is highly elastic (stretchy) and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring. People with the classic form of Ehlers-Danlos syndrome experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic shallow “cigarette paper” scars. The dermatosparaxis type of the disorder is characterized by skin that sags and wrinkles. Extra (redundant) folds of skin may be present as affected children get older.

Some forms of Ehlers-Danlos syndrome, notably the vascular and kyphoscoliosis types, can involve serious and potentially life-threatening complications. Blood vessels can tear (rupture) unpredictably, causing internal bleeding, stroke, and shock. The vascular type of Ehlers-Danlos syndrome is also associated with an increased risk of organ rupture, including tearing of the intestine and rupture of the uterus (womb) during pregnancy.

EDS Network Cares is a non-profit organization established and driven by EDS patients and family members who share a belief in, and a passion for research and education. This all-volunteer network is led by devoted volunteers whose primary goal is to make a difference in the lives of people who are suffering each and every day from Ehlers-Danlos Syndrome. 100% of your donations will go towards Ehlers-Danlos research.  

Our mission is to help improve the quality of life for people who have Ehlers-Danlos Syndrome, through research, education and support.

We believe..........

By supporting research, effective management techniques will be developed and ultimately, a cure will be found.

Through support, we meet the needs of those who deserve personal attention in crisis and in grief

Through education and advocacy, we promote awareness, understanding and ensure access to treatment
 

Thank you for visiting our fundraising page... In "Memory" of Alexa Simmons

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts.

Many thanks for your support.

If you would like to mail your donation...

Make check to EDS Network CARES Research

Ehlers-Danlos Syndrome(EDS) Network CARES INC

PO Box 66

Muskego, WI 53150

Website: www.ehlersdanlosnetwork.org

Email: EDSNetwork@wi.rr.com