Living wioth Ehlers-Danlos Syndrome

Living with a medically complex family that consists of people with Ehlers-Danlos Syndrome (EDS) and associated conditions such as Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Attention Deficit Hyperactivity Disorder (ADHD), and Autism Spectrum Disorder (ASD) requires not just resilience but also a keen understanding of how to navigate daily challenges, as well as a fair share of creativity. Families dealing with these conditions often find themselves in need of a variety of aids and gadgets to manage their symptoms and improve their quality of life. Here’s a comprehensive look at the essential gear that makes everyday living with EDS and its comorbidities a bit more manageable for us.

Customized Planning for Unpredictable Lives

The Happy Planner(or any disc-bound planner system), especially when customized using Canva, stands out as an indispensable tool for managing the intricate dance of appointments, therapies, and medication schedules. The ability to personalize this planner allows for the creation of a system that accommodates the unique needs of a neurodiverse, disabled family, providing a sense of control and organization amidst the chaos of managing chronic illness. Now that I am also blogging, I can create content planning pages as well. With the use of the happy planner hole punch, Canva, paper, and a printer, I am unlimited in what I can make that fits my exact needs. 

Ring Splints: A Simple Solution for Hypermobile Joints

For those with hypermobility, particularly in the fingers, ring splints serve as a crucial support mechanism. These splints help stabilize joints, reducing pain and preventing further injury. Their discreet appearance and functionality make them a must-have for individuals with EDS, offering both physical support and confidence in daily tasks.

Core Support: The Role of Steel Boned Corsets

On days when fatigue overwhelms me and my core muscles require extra support, a steel-boned corset can be a game-changer for individuals like me with EDS. Providing necessary support to the torso helps alleviate pressure on the joints and spine, allowing for better posture and reduced discomfort.

This idea is not unique to me; my doctor actually recommends abdominal compression for people having extra symptomatic days with dysautonomia. Corsets are not your only option, in fact he specified that he recommends any abdominal binder that is comfortable to you and provides compression. He also said not to wear it all the time, only for a few hours at a time. He said he understands why ladies prefer corsets for the aesthetic and that’s fine so long as its properly fitted and well made to be comfortable and not too restrictive. He also doesn’t want his patients becoming reliant, they are not a substitute for physical therapy and core strengthening, only an adjunct support.

I love corsets, I love the feeling (sensory) of the compression, and the extra boost to my posture doesn’t hurt either. You do you. If you want to wear a corset, do it, babes; just make sure it’s a correctly sized and well-made one.

Not a lingerie or costume cheap one from Fredricks or Hot Topic. Those cheap ones will not give you the appropriate support and are not made for long-term use. A well-made corset will be constructed from specific fabrics like coutil, the traditional textile of choice; steel boning is worth the expense, and spiral lacing. 

I always recommend that people research corsets thoroughly before purchasing one so they know they are getting quality. Youtubers like Bernadette Banner, Morgan Donnor, and Abby Cox are three of my favorites. They have videos showing all aspects of corsetry and really know their stuff. They even have videos showing how to make corsets. I have tried and failed several times. They make it look too easy. 

Compression Gear for Circulatory Support

Compression leggings and socks are not just for athletes. For those with POTS, a condition often accompanying EDS, these garments are essential for improving blood flow and preventing dizziness and fainting spells. They offer tangible support, enabling more active and engaged days. I personally wear compression socks and compression leggins, but, the goal is to rebuild my muscle tone enough that I only need compression garments on my worst days.

Managing Temperature Fluctuations and Allergic Reactions

For sudden hot flashes, a simple yet effective remedy is keeping hair ties on hand to pull back hair quickly or hair clips, offering immediate relief. I keep a sweater in my car year-round because my temperature regulation is not great. I have to have air conditioning. The first 3 summers in our home, we didn’t have AC, and I got so sick. We spent 30k getting a heat pump AC installed at the end of last year, and it was worth it to be able to function. Its absolutely a medical device for me but unfortunately I can not claim it on my health insurance.

Additionally, the use of Cromolyn Sodium before meals can significantly mitigate the gastrointestinal symptoms associated with MCAS, while Benadryl remains a staple for emergency allergic reactions, providing swift and effective relief. I also take a high dose nightly of Zyrtec as a baseline preventative. 

Technology as a Daily Aid

In a world where time management and reminders can be challenging for those with ADHD and ASD, smartphones equipped with various alarms and alerts become a lifeline. These devices help manage time-sensitive medications and appointments, ensuring nothing crucial is missed.

Each alarm and reminder has a different tone, and every so often, I change the tunes so that I don’t become normalized to my alarms and ignore them. Keeping the alerts fresh helps to keep my brain from ignoring a frequent sound. 

I have alarms for getting up, taking meds, taking my kid to school, going to the bathroom, eating meals, making meals, making appointments, picking my kid up, feeding the dog…the list really can get quite long. It’s a good thing phones have lots of options for alerts. 

Conclusion

Living with Ehlers-Danlos Syndrome and its associated conditions is undeniably challenging. However, with the right gear and aids, daily life can become more manageable and less daunting. From personalized planners to compression wear and emergency medication, each item plays a pivotal role in navigating the complexities of these conditions, empowering individuals and families to lead more fulfilling lives despite the hurdles of managing chronic illness.

FAQs

1. What makes the Happy Planner ideal for families managing EDS and associated conditions?
   1. The Happy Planner system and those like it allow for full customization. You are unlimited in what you can make. I have monthly and weekly planners, budget planning, blog post planning, password trackers, etc. 
   2. Using Canva (not sponsored) has allowed me to create beautiful printables at home, and if I want, I can send them out to professional printers for a reasonable price. 
2. How do ring splints help individuals with hypermobility?
   1. Ring splints are medical devices (orthotics) designed for fingers and thumbs. They are often recommended for people with joint hypermobility conditions that allow the joints to extend beyond a healthy range of motion. They can also be used for arthritic and tendon conditions like trigger finger and mallet finger, Boutonniere Deformity, and Dupuytren’s Contracture, just to name a few. 
3. In what ways can a steel-boned corset benefit someone with EDS?
   1. Corseting compresses the abdominal cavity, allowing for better blood flow and improving venous return from the lower body to the heart. 
   2. A well-fitted steel-boned corset can offer significant support to the torso and spine, encouraging better posture. Improved posture can help improve the efficiency of bodily functions controlled by the already dysfunctional autonomic nervous system, such as breathing and digestion. 
   3. Orthostatic intolerances can be reduced by providing supportive pressure equally across the torso and reducing the gravitational pull on blood. Orthostatic Intolerance is a common issue for those with dysautonomia. 
   4. Psychological benefits can also happen simply due to the sensation of security and firmness, which can be comforting, especially in times of worsening symptoms or anxiety. This is important for people with chronic illnesses. 
4. Why are compression garments important for people with POTS?
   1. One of the primary issues in POTS is poor blood circulation due to blood pooling in the lower extremities. Compression garments, especially those targeted at the legs, abdomen, and lower body, help improve venous return to the heart. This means they help the blood flow back up towards the heart, reducing symptoms such as lightheadedness and fainting.
   2. For many people with POTS, standing up can cause an abnormally high heart rate increase. Compression garments can help control and reduce this response by preventing excessive blood pooling in the legs, thus reducing the heart’s need to beat faster to maintain blood flow to the brain and other vital organs.
   3. Beyond the physiological benefits, the physical sensation of wearing compression garments can provide a sense of stability and security. For some, this can be comforting and may help reduce anxiety related to potential symptoms.
   4. Exercise is often recommended as part of the management plan for POTS, but symptoms can make it about as enticing as touching a cactus. Compression garments can improve exercise tolerance by stabilizing blood pressure and reducing symptom flare-ups during physical activity.
5. How does Cromolyn Sodium aid in managing MCAS?
   1. Cromolyn sodium functions primarily by stabilizing the membranes of mast cells. This stabilization prevents the cells from releasing histamine and some other “inflammatory mediators” that are responsible for the symptoms associated with MCAS. By inhibiting this release, cromolyn sodium can help mitigate the frequency and severity of symptom flare-ups. Cromolyn sodium is used as a preventative measure instead of after symptoms flare.
   2. Compared to other medications that might be used to manage MCAS symptoms, cromolyn sodium generally has fewer and less severe side effects. This makes it an appealing option for long-term management of the condition, especially in patients who may be sensitive to the side effects of more potent medications.
6. What role do smartphones play in managing daily life with Neurodivergence like ADHD and ASD and comorbidities?
   1. Smartphones are essentially miniature computers in your pocket or palm. These devices can and do organize and regulate our lives. Calendars, alarms, alerts, reminders, and communication options all combine to help neurodiverse people stay on top of their daily lives, keeping us functional. The downside is when, not if something happens to your phone, your whole world will be upside down for a few days. 

DjinniWhispers

• July 2024
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