Living with Ehlers-Danlos Syndrome (EDS)

Interview is with Tammy Boykins of Rib Mountain, Wisconsin. The information below is from Tsilos Schoener, Tammy's sister.

"Tammy was diagnosed with Ehlers-Danlos Syndrome (EDS) in 2009 after countless doctor and emergency room visits. Nobody could figure out the bottom line about what was plaguing Tammy and causing her so much pain at different areas in her body. Finally she was referred to a Rheumatologist and spent a day at the doctor's office performing test after test. These tests generated some disheartening results, but Tammy was not surprised and did not let the news get the best of her; instead, she used the information provided to her and did further research into the various maladies she was diagnosed with. There are various forms of EDS, Tammy was told that she has the classical type, but all types are caused from a genetic mutation in her DNA, meaning that it was passed on to her from one or both of her parents.

EDS has changed Tammy's life. Although she was diagnosed with other diseases such as Dysautonomia and Fibromyalgia etc., the one that is debilitating her the most is EDS because of the extreme pain it causes her on a daily basis due to her joints, muscles and ligaments stretching too far and coming out of place in various locations all over her body, as well as many other painful symptoms such as her skull bones separating, and rashes and allergic reactions to medications. She has tried medicine after medicine to help treat her symptoms and pain, but has found that, like many other people with EDS, she has allergic reactions to most, and with some she has adverse side effects that are intolerable, or she has opposite side effects, meaning that if the pamphlet states that a side effect is tiredness, instead she will be wide awake and anxious. The doctors have tried various medications, combination of medicines, and have altered her dosages in an attempt to control the wacky side effects to little or no avail.

A couple of months ago her pain management doctor recommended Prolotherapy treatment. Prolotherapy can help her body heal itself and there has been a lot of success with other people who have EDS. We have read about people going into the doctor's office for Prolotherapy in a wheelchair, then after they've received Prolotherapy and their body has had the opportunity to heal, they are walking around and living a mostly normal life.

So, what is stopping her from receiving this wonderful, healing therapy? Cost. Although Tammy has insurance, both types of Prolotherapy were denied. Which leads me here. To this site. To start this benefit. To help my sister get the medical care she not only needs, but that she deserves. Tammy is a hard-working and wonderful person who maintains a positive attitude towards life. She is always willing to help out where she can, and she has a huge heart. Her clients come back to her repeatedly because she not only does a great job on their hair, but also because she is fun to be around, she listens, and she is compassionate. Tammy is a strong woman who has overcome many obstacles in her lifetime, and she doesn't deserve having this incapacitating pain on a daily basis. Although she goes to the pain clinic, the chiropractor, the Rheumatologist, her family doctor, the walk-in clinic, and the emergency room regularly, nothing has successfully worked to regulate her symptoms and pain.

We have hope that we can raise the money necessary for Tammy to receive Prolotherapy because we have great faith that Prolotherapy will work, just as it has worked on many others with EDS. Without this treatment her symptoms can only get worse than they are already, meaning the pain can only get worse as well. Without your help, Tammy will never be able to afford this miracle treatment, and she is too proud to ask for your help, so that is why I am asking. Please help my sister, Tammy! I don't want to see her in a wheelchair before she turns 35 when there is a treatment out there that can help her heal. It is cruel that insurance won't cover the procedure, and so now I am asking friends, family, neighbors and community to come together and help me make it possible for Tammy to heal and get back to living a semi-normal life once again.

After a preliminary investigation of the costs involved, we have decided on a figure of $5,000 to get Tammy the number of treatments she needs in the various areas of her body that need it. We are currently working on setting up a trust account for her donations. If you are strapped for cash, there are many other ways that we could use your help, used items, crafts, and other talents."

To help Tammy and learn more about EDS please visit her web site at http://sites.google.com/site/tammysbenefit/

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[EDSWisconsin]

@LucaBlightBadass Yes, the prolotherapy helped me tremendously. It seems to work better in the less mobile joints including the back- depending on the severity and location of your ligament damage. I had chronic and disabling costochondritis for 16 years and I was ready to try anything. I have been 98% costochondritis free since my first prolo!!! (knock on wood)

[EDSWisconsin]

@Misana Have you joined any of the groups on facebook or are you subscribed to EDNF.org or the boards called Inspire? Contact me if you would like assistance. Hugs to you!

[EDSWisconsin]

@jdecano Thank you!

[EDSWisconsin]

@TheJayTrain As people age, we naturally get more stiff. I was saying that as people without a connective tissue disorder get older they become more stiff, we also become "more" stiff and therefore closer to "normal" on the laxity spectrum. You are exactly right about the arthritis...even though we stiffen up a bit, our previous injuries have already damaged our bodies. I did clear this up in the later part of the video. :)

[EDSWisconsin]

Hi! My name is Tammy and I am the girl in the video! Its amazing to see what I looked like just a mere 9 months ago. We are planning to do a follow up video (or 2 or 3...) Yes, Prolotherapy has helped me very much. It helps in the less mobile joints more than in the shoulder, hip or neck. Please visit my fb page Ehlers Danlos & Joint Hypermobility and check us out or send me a message! Gentle hugs all!!!

[LucaBlightBadass]

Hi there i have eds i was just wondering if the prolotherapy treatment helped your sister in anyway, cause i have ligament damage in one side of my back which is shifting my spine! Your sister realy inspires me to keep going dispite the pain i go through on a daily basis.

[LucaBlightBadass]

Did prolotherapy help her im wanting to get it done on my back, due to my hypermobility?

[Misana]

I wish I could meet other people with this. I just told a friend about it and she was rather dismissive. What's new. lol

[TheJayTrain]

i dont understand how you think that once you get older you will get more normal, but the joint damage happening now is going to cause an early onset of arithritis

[broadwaydiva37]

I have EDS. It took them 12 years to find it out :( how do u deal with it??? I have so much trouble with it, but I know I could have it worse