Your Ehlers-Danlos Guide
Your Ehlers-Danlos Guide from EDS Awareness.com / Chronic Pain Partners.com
Table of Contents:
What does our program provide for EDSers? ………………………. Page 1
Top 5 things you won’t want to miss on our website .,,,,,,………… Page 2
Who is the EDS Awareness group and what is our motivation? .. Page 6
EDS is not rare – its rarely diagnosed! ……………………………….. Page 8
“The 4 Most Painful Losses Suffered by EDSers and How to Manage Them” …. Page 9
Contact us or Join our team! ……………………………………………..Page 13
What does our program provide for EDSers?
EDS Awareness is a national network of support groups & educational resource:
Support Group Directory & Map
Webinars, resources, articles, links
Public awareness information
Support for EDSers and their caregivers
EDSer-recommended literature, products & services
EDS Awareness provides the following free Programs:
Webpages & coaching to start, grow, organize and publicize your local support group
Connect with experienced EDS Support Leaders via online meetings
Assistance in planning & promoting your local awareness activities
Opportunities to get involved
Top 5 things you won’t want to miss on our website:
1. Free webinars by EDS experts hosted twice per month
Click “webinars” on the homepage. Search more than 60 EDS presentations in our video library.
2. Our network of 100+ support groups Visit the map on the homepage, to find a support group near you, or contact us for help starting a support group, which includes a free website:
Directory of Local Support Groups
We help EDSers find or organize support groups in their local communities. Our free program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more… If there is no group in your area, we will help you survey interest and connect with local EDSers. Contact us at firstname.lastname@example.org for help or to be included in the directory.
3. Awareness Materials
Print our awareness brochure and wallet card for your local awareness efforts. Share statistics from our EDS World-Wide Survey.
View or print at: http://www.chronicpainpartners.com/brochure/
Read more details at:
4. Share your testimonial, read awareness articles or take a survey. These features are located in the lower half of the homepage.
5. Visit the store that funds our program… www.BodySupportStore.com
Browse more than 250 products for EDSers.
Who is EDS Awareness and what is our motivation?
We’d like to answer that question with a story… told by our Co-founder, John Ferman.
Our Story: “My wife had EDS and didn’t know it”
We were married for 41 years. You’d think that after all of that time you would know everything there was to know about a person.
– I knew Carol was a loving person who would do anything she could for the kids and the family.
– She was a social worker and very concerned about the comfort of others
– She didn’t complain and didn’t want others to worry about her.
The symptoms started shortly after we were married in 1967. Carol was a very energetic lady who had just graduated with honors and a master degree in guidance and counseling and she was anxious to start this new career. She also was somewhat a “perfectionist” who wanted to keep the house clean and organized, but started to develop some pain as a result of this. I remember attending Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented at how “flexible” Carol seemed to be during the exercises. Our first daughter, Deborah, was born 4 weeks premature and the second daughter Deanna was 7 weeks premature. We joked that – if she got pregnant again – we would have to carry around a basket to be ready for the next one.
Carol’s joint pain became more severe in the 1980s. She was the first director of a new “Crisis Hotline” in the Cleveland, Ohio area and she was working unusually long hours. With all of these mental and physical stresses she was going to a chiropractor monthly and then weekly. She was getting massages on a regular basis. Initially, her neck, back and shoulders were the major issues. Then she developed chronic problems with her hips, knees and feet. The doctors did not understand the cause of her pain and they could only recommend pain medications, topical creams or muscle relaxers. It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe Fibromyalgia … but they were not sure.
She could only sustain working for a few more years with flexible hours, then it became too much for her physically.
She described her constant pain as “achy or throbbing”. She had frequent episodes of radiating pain, stabbing, ‘pinched nerves’ and numbness. She would say things like “I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body.”
She would describe affected parts of her body as: shifted, twisted, crooked or her favorite word “dis-combobulated” (meaning everything is zig-zag and out-of-whack).
We had never heard of joint hypermobility or Ehlers-Danlos Syndrome (EDS). We did not know that her symptom descriptions were suggestive of unstable, loose joints.
Soon, I discovered that I was taking over the household tasks of cleaning, doing the dishes and the laundry. Some family members commented that Carol “looked perfectly fine” – so she must be lazy and just taking advantage of my help. I knew there was a problem with her pain, but I did not know what it was or what else I could do to help.
In addition, Carol had severe environmental allergies, IBS symptoms and an extremely “sensitive” stomach. She avoided certain foods, spices, and oral medications due to this. Her allergies often put restrictions on where we went out for dinner or social activities and where we purchased certain items – always avoiding chemical odors, dust, mustiness, pets and cigarette smoke, etc.
Carol had very flat feet and was prescribed orthotics. Her feet were always hurting and finding comfortable shoes was challenging. She had very sensitive hearing and was a very light sleeper. Even low volume noises or voices in the next room would wake her. Pain and disturbed sleep meant she always woke up exhausted!
Carol had a lot of extra pain if she tried to carry something that was awkward or too heavy (ie. weighing more than 2-5 lbs., depending on her pain level that day.)… By age 8-10, my daughters could carry heavier items than Carol could, so the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and got the kids off to school.
As a result of her sleep problems and pain, she was often in bed until the kids got off the schoolbus. The girls would run upstairs to the bedroom, eager to spend some quality time with mom – as she was getting out of bed in the middle of the day. Moments like these with her girls gave her some comfort and support. The girls remember these as a special times, but they sometimes felt embarrassed – they could not tell anyone that their mother was in bed all day.
Carol’s muscles were always tight, and she often described her pain as if “one part of her body was pulling at another”. (For example, my shoulder is pulling on my neck.) The only exercise she could tolerate was very slow walking – that is, if her hips were having a good day. She enjoyed walking together, slowly, at sunset, in the park. She had pain driving a car and searched extensively to find the most comfortable car – so that she could remain independent. It was very stressful for her to be a passenger in a car; she would try to brace herself for the starts/stops, bumps, and turns. If I was driving, she would request alternate routes for straighter roads. Even gradual curves on the highway caused additional neck, shoulder & back pain. We would sometimes go 3 or 4 miles out of our way to find a smooth, straight road for her to travel on.
We never knew these were telltale symptoms of joint hypermobility.
She was always very discouraged that the doctors did not believe her symptoms because their tests came back as “normal”. Eventually, she stopped telling them about her pain. She was told there was no treatment or even a REASON for her pain…. Doctors told her she was overly-sensitive, exaggerating, or “Oh! it’s just all in your head…”
It really bothered her that her medical records said all those bad things about her “mental state”. She tried at times, in vain, to get the records changed. She knew that when she was depressed, it was due to fatigue, lack of sleep and pain. Not because she was making up things to be sad about.
We continued to play out this very difficult lifestyle for decades – until Carol was diagnosed with breast cancer in 2002. The continuing pains, surgeries and chemotherapy took their toll on her and she had a major struggle with clinical depression for a long period of time. After that she was on so many medications that they masked many of the original symptoms.
Carol passed away in 2008 of breast cancer… the same year my daughter, Deanna, was diagnosed with EDS. In her early 20s, Deanna developed many of the same symptoms and pain as her mom had. They often talked about the similarities and offered each other comfort and understanding. Looking back, Deanna recognizes that her back & joint pain during her child and teen years, wasn’t normal.
Deanna heard about EDS through an EDS patient who worked at a local cancer support center… NOT from a doctor. This EDSer took the time to notice Deanna’s wrist braces and ask her about them. Then she told her about EDS.
This encounter was 10+ years too late! More than 10 years prior to this, Deanna was diagnosed with instability in both wrists by an orthopedic specialist at a well-known hospital. The doctor gave no explanation about hypermobility. He did not explore whether she might have a similar condition in any other joints (despite the pain.) The treatment was pain medication and one visit with the occupational therapist for “strengthening” exercises – which made her pain worse. Deanna’s joint pain and other EDS symptoms continued to escalate rapidly during the 10 years between her potential diagnosis and her actual EDS diagnosis…
If only SOMEONE had told Carol about EDS... it would have saved both mother and daughter much suffering, loneliness and judgment. I don’t have room in this article for all the details about how undiagnosed EDS harmed my wife & daughter’s lives. Just believe me when I say emphatically – had they known about EDS, their lives would have been dramatically different!
Tell someone about EDS everyday – I do! YOU could improve a life, or even save one!
Ehlers-Danlos Syndrome (EDS) is a genetic defect in collagen protein (serving as “glue” that supports and holds the body together). EDS causes chronic pain, joint hypermobility (“double-jointedness” and fragile joints) and affects multiple other body systems. There is no “fix”- no medicine or surgery – that resolves this condition. However, it is important for the condition to be diagnosed and managed, so that symptoms can be controlled and appropriate preventive measures can be taken.
Many of those suffering from EDS are never diagnosed during their lifetimes. They suffer in pain for many years and die – still not knowing why they had the pain.
Carol can finally rest in peace.
8. EDS is not rare – it’s rarely diagnosed!
Awareness is critical.
Each year, only 5% of EDS sufferers are diagnosed with one of the 6 types of Ehlers-Danlos Syndrome. EDS experts estimate a prevalence of up to 1 in 100 people worldwide. Dr. Rodney Grahame estimates more than 650,000 sufferers per year in the United States go undiagnosed. Many affected by EDS – and the people who care for them – don’t know where to turn for information, advice and help with the issues surrounding EDS such as treatments, knowledgeable medical providers and products to assist in managing the symptoms. The majority of those who are undiagnosed do not know this disorder exists and are left on their own, struggling to find a reason and a name for the pain and suffering they are experiencing.
Print our EDS brochure & wallet cards to spread awareness in your local community! Share our free webinars! Tell someone about EDS today and everyday!
If you are an EDSer, or are suspecting EDS, but are undiagnosed — please take comfort in the fact that we understand your experience – and the pain and frustration that often comes with it! See if you can relate to the challenges in this story, and then we will describe how to tackle them!
If you are not an EDSer, please read this example of daily life described through the eyes of an EDS patient.
The 4 Most Painful Losses Suffered by EDSers and How to Manage Them
Ehlers-Danlos patients (EDSers) experience many losses in their life due to this devastating disorder. Many of these losses are physical, but deep layers of emotional and mental stress add to our burden. In our experience, these are the 4 most painful “non-physical” losses that EDSers grieve throughout their life.
4 Most Painful Losses Suffered by EDSers:
- Loss of ACCEPTANCE
Loss of CONNECTION with others
I feel that no one REALLY understands what I am going through. Since EDS is poorly understood, I have become accustomed to judgment and scrutiny. Being misunderstood has become an expected and constant part of my life. Often I am viewed as being weak and lazy. To the untrained eye, I look perfectly healthy – at least from the outside. Through the years, several doctors have told me “it’s all in my head”. I know the pain I feel is real, so this demoralizes me and makes it hard to trust medical professionals. Even though I now have the validation of my EDS diagnosis, I am still often misunderstood. Sometimes it’s hard to gather courage to talk to yet another doctor or friend about my health. I must prepare for rejection and criticism, once again. It is challenging to keep a healthy self-confidence in this situation.
Sometimes, I am perceived as a chronic complainer, and I have lost friends who get frustrated because they do not know how to help me – or worse yet – do not believe me. Others don’t understand why it is difficult for me to make plans or keep commitments. It’s because I cannot predict how I will feel later that day or next week. I wish they could learn more about EDS. Then they may realize that I am not exaggerating or causing difficulties for them on purpose. I really do try my best! I am actually over-achieving on most days when I should be resting – they just cannot see it.
Some friends or family get weary because I need extra help with physical tasks. It bothers me to keep asking for help with things that others view as simple tasks, such as opening a door or picking up something that fell on the floor. I rely on family and friends to help me maintain a manageable level of function and comfort.
Thankfully, some family members help me willingly and try to understand. But the ones who do not have EDS themselves can’t be expected to really understand – not completely. Other family members don’t relate at all. They may resent my needs or request for help, make me feel guilty for asking, or simply refuse to help. Maybe they think I should “tough it out” or cannot imagine I am in that much pain. I wish someone could explain to them that “pushing through pain or fatigue” is the worst thing to do when you have EDS…This is because most EDS pain is due to acute trauma that causes actual tissue damage. (It’s not just an ache or muscle strain that they might be familiar with.) Sometimes I feel like I have to struggle alone. I feel ignored. Often I feel unimportant and like I don’t matter to them. Sometimes I just feel like giving up, not bothering others and just living alone with my pain….but that is not my style.
- Loss of my JOB AND INCOME
Loss of my IDENTITY
Loss of a PLAN-able and CERTAIN future
When I meet new people, they often ask “what do you do?” I don’t know how to respond to that question anymore. I lost my job, my career, my livelihood. I am a well-educated person. I went to a good college and I was employed at a good company until EDS made it nearly impossible to continue working on the computer. I worked full-time for 12 years, enduring excruciating levels of pain – not realizing that I was damaging my joints by trying to “push through the pain”. I knew something was wrong, but I was misdiagnosed over and over again.
Two years prior to my EDS diagnosis, I had reached the point physically that I could not work anymore. So, I applied for disability. Filing for disability can be a huge undertaking – even for those who know the cause of their disability. Since there are limited number of doctors who can correctly identify EDS; it can take a patient years to find the needed doctor’s evaluation and diagnoses for a disability claim. I worked hard, and it took a few tries – over a couple years. Eventually, with my diagnosis and stacks of supporting documentation, they finally granted it. Again, I still look healthy. During that process, my claim was always in question!
Finances are now more difficult, and I continue to be very frugal. My medical bills really add up, so I use coupons at the grocery and I try to buy only what I need. I buy my clothes at thrift stores and look for budget haircuts & beauty products. Sometimes I feel like we are living “hand to mouth”. Planning for the future is worrisome because there are many health problems that can develop as a consequence of EDS. And most EDS patients report that symptoms progress and worsen as we age. The only thing that seems certain in my finances is that medical expenses will continue to increase …
- Loss of INDEPENDENCE
Loss of CONTROL over my daily life and activities
I struggle with pain and fatigue while trying to accomplish “simple” daily-living tasks. It seems like most of my day is spent nursing myself to try to maintain my health and taking care of “me”. I make plans for the next day knowing that I may not accomplish them because of my physical condition that day. If I dislocate or sprain a joint, shift a hip out of place, or pop a rib, I will be in even more pain than usual. That extra pain might last for a few hours or a few days. As a result, I may have to put off a trip to the store, making a meal, wiping up or picking up after myself. I may have to cancel a medical appointment. Frequently, I miss the opportunity to visit with friends or family for a planned social activity.
I have to be extremely careful about what I try to do. I must be very conscious of how I am moving, so I do not injured myself. I have learned to avoid many tasks that consistently result in injury. Still, every day there are other injuries that cannot be anticipated. I would love to clean my house or do some yard work. Most days, I struggle to wipe the counters and load the dishwasher. I prioritize my activities as much as possible. Unfortunately, EDS has control over how the day unfolds – not me. My EDS-related gastrointestinal problems and POTS add to my difficulties.
I wish I could exercise everyday. When I am having a “good day”, I am able to exercise or do some physical therapy. This feels rewarding. I used to have many hobbies & activities I enjoyed doing. I am still interested in many, but the majority of them are no longer possible. I grieve the loss of activities I could do in my teens and early 20s, but I cannot do now – in my 30s. On many days, I feel like I am 80. Now I need to be much more cautious to protect what integrity is left in my joints. It is very physically and emotionally draining to live this way. The only thing that feels certain is that there’ll be more physical-ability losses to grieve as the future marches on…
- Loss of my ability to CONTRIBUTE to loved ones and to society
Loss of SIGNIFICANCE – I’m not able to make a difference
Loss of SATISFACTION from accomplishments and successes
I had great aspirations for my life. I visualized a vibrant and active family life and a rewarding career, while helping others in need. Now I am the needy one. I spend most of my day slowly and carefully trying to accomplish my daily living activities and saving energy for doctor appointments. It seems like I spend more time with my doctors, massage and physical therapists than I spend with my friends and family.
I have no children. Even in my early 20s, I reached the point where I was unable to even lift a newborn. I knew I had too much daily pain and fatigue to take care of a baby or child. Now it is much worse. Sometimes I feel like I don’t matter and have not accomplished anything significant in my life. Through my struggles, I have developed tremendous understanding and empathy for others. And I want to feel the satisfaction of helping others in need… But don’t know how. Whatever I do … it has to be easy to incorporate into my life and must be flexible, so I can do it on my “good days”.
On my “good days”, I have spent a lot of time learning about EDS on my own. When I was first diagnosed, I kept thinking, “There must be someone out there who has gone through the same steps that I am doing right now… Each of us spending hours and hours searching on the same topics. Why must EACH of us “reinvent the wheel?” Why can’t we all benefit from each other’s efforts to gather information and sift through it to extract what’s important.” After all that effort and pain from working on the computer, I wish I could contribute what I’ve learned from my research. If EVERYONE contributed knowledge on their researched topics & experiences – and we put it all in one place – wouldn’t that be a wealth of information?!
I wonder if other EDSers are having the same challenges I have? What was their experience with diagnosis? How are they dealing with their daily challenges? I wonder what solutions they’ve discovered? How are their families learning ways to be supportive? I wish I could get feedback and advice from people who are going through the same difficulties that I am. I have some tricks and tips of my own that I would be excited to share with others. What if there was a place where I could share my learned knowledge and experiences with others?
My friends & family don’t fully understand what I’m going through. If they had EDS, they would “get it”. I’ve never met someone else who has EDS, but I’ve been daydreaming about it lately.. I wish I could form friendships with other EDSers in my area. We’d have a lot in common to talk about. We could offer each other support and share good doctors. Our families could meet each other and learn more about EDS and how they can support us. We could spread the word about EDS in our community… maybe even change the life of an undiagnosed person by telling them about EDS! I could really make a difference then!
I wish there was an easy way to accomplish these things… Because there are days when I really need support – and days when I really want to contribute and encourage others! I was beginning to feel like I am the only one who has these needs…
Then I found EDSawareness.com !
EDSawareness.com provides resources for EDSers and their caregivers. They will help you join or organize a local support group and show you how to find new members. They provide free webpages for your group so you can communicate with members, attract new members, and post meetings, activities, articles, tips, experiences and local resources.
Through the EDS Awareness community, I can see a brighter future and new ways to manage my losses:
- I am accepted by my EDS peers, and I can connect with others who truly understand.
- My future is brighter, and I can form a new identity and purpose – where I am the “patient expert” and my input is valuable to others in the community.
- I can reclaim my independence by discovering resources and tools to help me accomplish more.
- I am significant, and I can make a difference for myself and others.
– To assist and encourage support groups to organize and spread knowledge about EDS in their local communities
– To help EDSers locate valuable information, continue to learn, and share resources with their EDS peers
– To educate medical providers and the public about Ehlers-Danlos Syndrome
– To promote EDS awareness on a local and national level
I can participate in EDS awareness and mentoring new EDSers:
The EDSawareness.com network of support groups can reach undiagnosed EDS sufferers and answer their questions, such as:
- How can I learn more about EDS?
- Where can I get help and a proper diagnosis for myself or someone I care for?
- Once diagnosed with EDS, where can I find support?
I can share my experiences with the EDS community. Here are just a few ideas:
- My diagnosis … when and how?
- How long did it take to get my diagnosis?
- What were my challenges along the way?
- How did I solve them?
- What knowledge would have made the journey easier?
- What resources have I used?
- What articles, books, or websites have helped me?
- What other resources would be helpful to those newly diagnosed?
- How do I manage limitations and challenges in my daily life?
- Techniques & tools I use?
- Therapies that work for me?
- Which products help me accomplish tasks more easily or help me rest, relax, or sleep more comfortably?
- What inspires me or helps me stay positive and hopeful?
I hope you are excited to join this community and join or start a support group in your local area!
You CAN make a difference. You are the expert on living with EDS. Share your knowledge and experiences with others, so we can all learn together and improve our lives! Please visit us often to learn more from the experts. Now, you’ll be better equipped to tackle the daily challenges you face. We hope you’ll share your story on our new testimonials webpage, and utilize our EDS educational materials to spread awareness.
13. Find and Channel Your Passion for EDS Awareness!
Explore opportunities to participate at your own pace from home. Our team of like-minded EDSers are passionate to help others — and need your talents! Please email to connect with us.
Contact us to join our team!