About me
I am a 35 year old male living in San Tan Valley, Arizona. I have been married for 12 years to my lovely wife, Teresa. I have a daughter, Eliana, who will be 2 in August, and a son, Liam, who will be 5 in February. I was formally diagnosed with Ehlers-Danlos Syndrome in early 2015, but have been symptomatic my entire life. My family has the form of EDS that effects the connective tissues in our joints and skin, but we have not found it to affect the soft tissue for organs. I come from a large family, and am the oldest of my cousins on my mothers side. Several of my cousins on my mothers side and one of my aunts is formally diagnosed with EDS, and a couple of others are in the process of getting approved for SSDI for it currently. A couple of my female cousins have seemed to get the worst of our family's symptoms so far. All of us have had hyper mobility in joints growing up, all have thiner frames, but it wasn't until some of the dislocations became frequent and unexplained that we, as a family, realized what we were dealing with. I would have dislocations in sports and martial arts frequently growing up, but we figured the injury was from doing the sport itself. When one of my cousins was in high school, she had multiple ribs dislocate as she was walking down the hall, and the pain caused her to immediately black out. She wasn't doing any activity that should have provoked such a dislocation, so we all knew that we needed to find out what specialists were out there and what treatments are available. Some of the girls dislocations are so frequent that they were able to get them documented with excellent doctors that were able to assist them in getting placed on SSDI, so at least they have some form of income now. Some of my cousins will probably have difficulty ever living alone or not depending on a care giver, and they are in their earlier to mid 20's now.
I started studying martial arts at age 5. I played several other sports, but found that I wasn't very good or interested in them. Martial arts is what stuck. It has lead me to study similar exercise styles that were less combative but had similar positive effects on our bodies as I noticed my joint and bone strength depleting in my 20's. Yoga, Pilates, Qi Gong, and different exercise machines have been a regular part of my life, and that is the main reason I have been able to work full time and manage my symptoms without medication into my mid 30's. Growing up I still had several dislocations that were so severe that they required surgeries. I tore through a meniscus in my R knee at 18 that needed to be stappled together, and a similar dislocation in my right shoulder at 20 that resulted in it being stappled back in. Both joints still disclose, but not nearly as far or as painfully as they did before the surgeries.
At the end of 2013, my mother was diagnosed with ovarian cancer. it was already at stage 3 when they caught it, and started chemo therapy. My mother had EDS, but was never properly diagnosed. Within a short period of starting Chemo, her body wasn't able to bounce back, and she died at the age of 53 in September of 2014. EDS greatly effects the way different tissues in the body heal, and because of my lack of research and preparation when we knew this was something that my family and I have had in our 'cards', we went with a treatment option that wasn't the best course of action for my mother.
While caring for her, I badly herniated a disc in my spine and required a spinal laminectomy to correct it. Because of my EDS, I have had complications from the surgery and am not healing the way we were hoping I would. It has now afforded me the time to research EDS, and I am hoping to help others from making some of the mistakes I have made, and learn how to correct some of my mistakes in the process. I will be setting up something more formal soon. Either through this site or another, where I will have more detailed information about:
Exercises that have made a huge difference in keeping me mobil
Financial stuff....lots of financial stuff....I have worked in the financial sector for a major bank for the last 10 years, was in the medical field before this, and have been a martial artists my whole life.
Philosophies that have gotten me through the tough times. Takes what helps you, discard what doesn't!
I will have some help to offer, folks. I hope that I can, in exchange, learn from others' experiences and better prepare myself and my family for possible hardhships to come.
Thank you for reading!
I started studying martial arts at age 5. I played several other sports, but found that I wasn't very good or interested in them. Martial arts is what stuck. It has lead me to study similar exercise styles that were less combative but had similar positive effects on our bodies as I noticed my joint and bone strength depleting in my 20's. Yoga, Pilates, Qi Gong, and different exercise machines have been a regular part of my life, and that is the main reason I have been able to work full time and manage my symptoms without medication into my mid 30's. Growing up I still had several dislocations that were so severe that they required surgeries. I tore through a meniscus in my R knee at 18 that needed to be stappled together, and a similar dislocation in my right shoulder at 20 that resulted in it being stappled back in. Both joints still disclose, but not nearly as far or as painfully as they did before the surgeries.
At the end of 2013, my mother was diagnosed with ovarian cancer. it was already at stage 3 when they caught it, and started chemo therapy. My mother had EDS, but was never properly diagnosed. Within a short period of starting Chemo, her body wasn't able to bounce back, and she died at the age of 53 in September of 2014. EDS greatly effects the way different tissues in the body heal, and because of my lack of research and preparation when we knew this was something that my family and I have had in our 'cards', we went with a treatment option that wasn't the best course of action for my mother.
While caring for her, I badly herniated a disc in my spine and required a spinal laminectomy to correct it. Because of my EDS, I have had complications from the surgery and am not healing the way we were hoping I would. It has now afforded me the time to research EDS, and I am hoping to help others from making some of the mistakes I have made, and learn how to correct some of my mistakes in the process. I will be setting up something more formal soon. Either through this site or another, where I will have more detailed information about:
Exercises that have made a huge difference in keeping me mobil
Financial stuff....lots of financial stuff....I have worked in the financial sector for a major bank for the last 10 years, was in the medical field before this, and have been a martial artists my whole life.
Philosophies that have gotten me through the tough times. Takes what helps you, discard what doesn't!
I will have some help to offer, folks. I hope that I can, in exchange, learn from others' experiences and better prepare myself and my family for possible hardhships to come.
Thank you for reading!
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