Can people with Ehlers Danlos work? What kind of work can they perform?

See how people with experience in Ehlers Danlos give their opinion about whether people with Ehlers Danlos can work and what kind of jobs are more appropriated for people with Ehlers Danlos

Can people with Ehlers Danlos work? What kind of work can they perform?

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that affect the body's ability to produce collagen, a protein that provides strength and elasticity to various tissues. The condition can manifest in different ways and severity levels, leading to a wide range of symptoms and functional limitations. While EDS can present challenges in the workplace, many individuals with the condition are still able to work and contribute meaningfully to their chosen fields.

It is important to note that the ability to work with EDS varies greatly depending on the specific type of EDS, the severity of symptoms, and individual circumstances. Some individuals with EDS may experience significant physical limitations that impact their ability to perform certain tasks, while others may have milder symptoms that allow for a wider range of work options.

Factors to Consider:

When determining the type of work that individuals with EDS can perform, several factors should be taken into account:

Physical Limitations: EDS can cause joint hypermobility, chronic pain, and fatigue, which may limit certain physical activities. Jobs that involve heavy lifting, repetitive motions, or prolonged standing may be challenging for individuals with EDS. However, there are many occupations that are less physically demanding and can be better suited to their abilities.

Flexibility and Accommodations: Employers who are willing to provide reasonable accommodations can greatly enhance the workability for individuals with EDS. Adjustments such as ergonomic workstations, flexible schedules, and the ability to take breaks when needed can make a significant difference in managing symptoms and maintaining productivity.

Skills and Education: The skills, education, and experience of individuals with EDS are diverse, allowing them to pursue a wide range of careers. While some individuals may need to modify their work environment or tasks, their qualifications and expertise can make them valuable assets in various fields.

Work Environment: The work environment can play a crucial role in determining the suitability of a job for someone with EDS. Jobs that offer a supportive and understanding atmosphere, with colleagues and supervisors who are aware of the condition and its impact, can greatly contribute to a positive work experience.

Potential Work Options:

While the specific work options for individuals with EDS will depend on their unique circumstances, here are some potential career paths that may be well-suited to their abilities:

Desk Jobs: Careers that involve primarily desk-based work, such as administration, writing, graphic design, programming, data analysis, or customer service, can be suitable for individuals with EDS. These roles often offer the flexibility to accommodate physical limitations and provide opportunities for remote work.

Healthcare and Therapy: Some individuals with EDS may choose to work in healthcare fields, leveraging their personal experiences and understanding of the condition to support others. This can include roles such as patient advocacy, counseling, occupational therapy, or working in research and development.

Education and Research: EDS can inspire individuals to pursue careers in education or research, where they can contribute to raising awareness, improving understanding, and finding new treatments for the condition. This can involve teaching, conducting scientific research, or working in academic institutions.

Entrepreneurship and Freelancing: Starting a business or working as a freelancer can provide individuals with EDS the flexibility to manage their own schedules and tailor their work environment to their specific needs. This can include fields such as consulting, writing, graphic design, or e-commerce.

Advocacy and Non-Profit Work: Many individuals with EDS become passionate advocates for their condition and work in non-profit organizations or foundations dedicated to supporting those affected by EDS. This can involve fundraising, event planning, community outreach, or public relations.

Conclusion:

While Ehlers-Danlos Syndrome can present challenges in the workplace, individuals with the condition can still pursue fulfilling careers. By considering their physical limitations, seeking supportive work environments, and leveraging their skills and education, people with EDS can find work options that accommodate their needs and allow them to make valuable contributions to society.

Diseasemaps

Posted Apr 11, 2017 by Montana 1670

Some can work, some cannot. People with EDS should avoid working in a field that requires them to do work that hurts them.

Posted May 10, 2017 by stairphobe 3070

They can't work in every field. This might sound harsh but a lot of standing is really really bad for our joints. I'm 21 and I had to quit working in a supermarket because I couldn't stand standing for so long.
It depends of the type you have and if your symptoms are mild, severe or extreme but I do know, from talking to EDSers that a lot of us had to quit or change our dream jobs because of our syndrome.

Posted May 25, 2017 by Maria 2051

Some of us can work and others cannot. Your ability to work is based on a lot of factors. What work you can do is also dependent on your limitations.

Posted May 26, 2017 by Stephanie 800

Each person will suffer with eds differently. I can't say that all eds suffers can work when i don't know the circumstances of all other suffers

Posted May 27, 2017 by Jude 2050

Depends on the form you have. I used to work as a secretary.

Posted May 27, 2017 by Ashley 950

Again this question is necessarily predicated by "depending on the individual's personal EDS experience."

As levels of disability and symptoms vary, so too does the ability of each individual to work. Generally speaking EDSers a fully capable of all types of employment until their symptoms intensify as the illness progresses. This is because EDS is a deteriative condition.

As chronic joint, muscle and bone pain intensifies and subluxations/dislocations become more frequent, the degree of physical labour that can be tolerated will lessen. This extends to types of employment requiring long periods of time spent on your feet (such as shop assistant, restaurant wait staff). Even clerical and sedentary office jobs may become difficult over time due to pain and inflammation in the fingers. Lastly, chronic fatigue can make any type of employment unrealistic.

However, many EDSers overcome such issues by working part time; accessing ergonomic and disability specific equipment. Unfortunately, some EDSers will become so debilitated by their symptoms that employment eventually becomes outside their reach.

There is generally no specific occupation that EDSers are precluded from working in. Employment opportunities need to be assessed on a case by case basis.

Posted May 27, 2017 by Jay 201

Some can work and some can't. Some only have aches and others are bed or wheelchair bound. It is progressive so someone who can work this year may not be able to next year

Posted May 28, 2017 by Celi 2000

Many people do not work, but that is because their symptoms are not well managed. With good symptom management, which could take years to achieve for those already far down the path of misdiagnosis and pain, work is possible and also helpful. Apart from paying the crazy bills people with EDS incur, work can help one feel accomplished, which improves mood, which directly impacts pain. I highly suggest finding a way to be your own boss.

Posted May 31, 2017 by KathrynOConnor 2200

If you can work with Ehlers Danlos depends on the severity of which you have it.

Posted Jun 4, 2017 by Richelle 1750

EDS affects people differently, whether it's being bed ridden or having some minor joint pain. It depends on that person whether they can work or not.

Posted Sep 27, 2017 by Lbond94 4100

It depends on the person and they're symptoms for me I can't work

Posted Oct 6, 2017 by Sasha 2050

From personal experience, Yes EDS suffers can work. The work depends on an individual's pain levels, fatigue etc

Posted Oct 6, 2017 by Zara 300

Yes they can work but nothing labour intensive

Posted Oct 7, 2017 by Sharon 7050

It's subjective to the individual. For me, working from home is best. Problems with unpredictable symptoms and flares make traditional jobs impossible. Any field?, no, I don't think that is a realistic.

Posted Oct 25, 2017 by Dolores 3050

Yes of course they can and they should as long as they can, with supports and services. It helps if the position is flexible on hours, does not involve standing for long periods, working in a hot or cold environment, and limited lifting.

Jobs that allow for movement.
I can no longer work and gave up a top notch career. The most devastating part of EDS is having the choice to work taken away. I could no longer choose to get up and push through as this disease finally made it impossible to push through. However, what was hardest is being recognized as a person that still has a brain and can still contribute to society. Help the person with EDS to easliy get the supports needed and the alter or tweak what they already know, and conform the position to work from home, be their own boss. Again, education and knowledge are vital to helping ourselves and others to understand how to live, treat the illness when things go 'south' as they do, but still be able to feel like a part of life. EDS can be very isolating even in a crowd of people. Invisible illnesses (such as this one) can isolate someone and reduce their sense of self worth quickly, which starts a cycle that can destruct their physical health and mental well being.

Having a job, keeping a career, going back to school....ALL so important for everyone, and it is not always available to everyone. But it should be.

Posted May 11, 2018 by Izzy 600

yes but it depends on each person's severity, subtype, and what type of work they're going for.

Posted May 26, 2018 by Danielle 1500

Si. Siempre y cuando se sienta bien y el cuerpo le de. Trabajo q no tenga desgaste físico

Posted Jul 6, 2018 by Estefania 1150

Of course they can work until you decide you can't. My daughter had to quit dancing ballet and teaching dance, she cannot walk very far anymore. She is now an adjunct instructor for psychology classes at 2 universities. But she forces herself to keep going because of bills when she really needs to rest.

I don't believe most ppl with Ehlers needs to be lifting heavy items, reaching up or down very often, dancing often (dancer). I think you would probably need. job where you can sit often and not too stressful.

Posted Mar 21, 2019 by pianocat_61 1400

Yes try to balance tasks with standing and sitting and no repetitive activities

Posted Sep 29, 2019 by Amy 13500

It depends on how severe it is and what subtype. Strenuous physical activity or repetitive motion both would be very painful and damaging. Before I came down with CFS/ME, I used to work and go to school, and I think many other people do as well but not all. If I had to guess, I'd say 80%+ of people who are hypermobile type like me work because they can force themselves to and don't really have the option not to work.

Posted May 12, 2020 by Alex 3551

This will vary from person to person and their symptoms

Posted Nov 19, 2021 by NuNu 2550

Some can and some can’t

Posted Nov 28, 2022 by Taiy rinaldi-bull 600

Translated from spanish Improve translation

Depends on each person and their symptoms, but in general if you can work

Posted Mar 25, 2017 by Paula Lopez 1151

Translated from french Improve translation

It is quite variable from one person to the other violations are as varied as the number of people with !

Posted Aug 16, 2017 by Apolline 1205

Translated from french Improve translation

As long as the symptoms are limited, the SEDiens may well be working. We will avoid, however, the job where we wear loads, where the movements are too repetitive, and you will be able to prioritise the job where the position changes according to the time of the day (cumulate phases sitting, standing, walking, etc is ideal)

Posted Aug 17, 2017 by Sandrine 1790

Translated from french Improve translation

No charging port
Office work
Not in stature, standing prolonged
Part-time (therapeutic or non-therapeutic)
All the sed may not work
Adjust the position (crutch / wheelchair if needed)
No repetitive movements

Posted Aug 30, 2017 by Ehos 1050

Translated from portuguese Improve translation

Can work and have normal lives. Only have to take care with your limits and learn to say no to others and to yourself when you realize that you do not have the conditions to accomplish something.

We work heavy are not recommended for people with this syndrome because of hypermobility joint does not allow for pick up weights exorbitant.

Posted Aug 30, 2017 by Kayla Rarine 2000