Working As A Research And Genealogy Case Manager With Ehlers-Danlos Syndrome

Chloe Walters, UK

Summary: Chloe Walters was in her twenties when she was diagnosed with Ehlers–Danlos syndrome (EDS).

Ehlers-Danlos syndrome is a group of conditions that affect tissues that support the skin, bones and blood vessels. Chloe has hypermobile joints and her condition leads to a constant baseline level of fatigue and pain which can flare up from time to time. On a bad day, Chloe will struggle to get out of bed due to fatigue, stiffness and pain.

First game changer: Getting a second opinion

Unfortunately, Chloe was initially caught on the diagnosis merry-go-round and despite numerous well intentioned health care professionals wanting to help no-one was sure what was causing her problems. Despite being in a vulnerable position, Chloe had the strength to ask for a second opinion and was eventually referred to a Physician who specialises in EDS at University College London. Very soon after reviewing Chloe’s case they diagnosed Chloe with EDS. For Chloe this moment was a pivotal turning point in her journey to understanding and accepting her condition.

The Little things that made a big difference

Working part time:

For Chloe, work has been very important in helping her build a happy fulfilling life. To ensure that she minimises flare ups Chloe works part time as a Case Manager for a Research & Genealogy company.


Chloe has learnt that if she pushes too hard, it can lead to significant pain and fatigue the next day. For this reason, she is much more careful with how much she does each day and how she breaks down what she needs to do. The idea of spreading out and prioritising tasks is known as pacing and whilst some people initially reject this form of condition management, it can be a game changer for those who really need tight regulation of their daily activities levels.


For Chloe too much sitting or standing can lead to flare ups. For this reason, she has become much more vigilant about regularly changing position between sitting and standing. One simple inexpensive approach is to set a timer so that you get a reminder when it is time to move.

Animal companion:

Chloe has found having the company of a cat is really helpful; particularly on the days when she is really struggling to do anything productive.

Keeping the dream alive:

Chloe’s initial dream was to work in fashion. Whilst she doesn’t feel this environment would suit her now, she has never lost her passion for creativity and now keeps this part of her soul nourished by crafting in her spare time. What’s really interesting is that if Chloe is having a really bad day, when it is difficult to do much, she still can get a creative fix by searching through Pinterest and saving inspirational ideas.

Social media monitoring:

Like many other people that we speak to Chloe has a love hate relationship with social media and has learnt to avoid it when she is not feeling well.

Learn More About Chloe’s Work

Chloe is A Research And Genealogy Case Manager. Her work is varied ranging from document searches, research checking and finding missing heirs to project management.