Month: June 2022

June is Myasthenia Gravis Awareness Month.  If you have never heard of MG, you are not alone!  We reached out to Friend in the Fight Katie McCurdy to shed some light on this autoimmune condition that affects tens of thousands of Americans.

Katie McCurdy is an autoimmune patient, designer, and founder of Pictal Health, a company helping patients tell their health stories visually. Learn more at katiemccurdy.com and pictalhealth.com.

diagnosis 

When I was 13, I was sitting at dinner with my family and my mom said, “why are you laughing like that?” I ran to look in the mirror and was met with a strange, snarling expression instead of my usual laughing face. 

The symptoms came on that quickly. Perhaps it wasn’t overnight, but it was very fast. Sudden facial weakness meant I was having trouble smiling and playing the clarinet, and my arms tired while washing or brushing my hair. My eyes felt droopy and I had double vision while looking to the right. I felt fatigued all the time.

I was incredibly lucky that my pediatrician immediately suspected Myasthenia Gravis, a neuromuscular autoimmune that causes weakness. She referred me to a local neurologist who confirmed the diagnosis within weeks of my first symptoms. 

symptoms 

Myasthenic weakness is caused by a breakdown in the nerve synapse. But what that weakness looks like can be different from person to person; they call MG the ‘snowflake’ disease because it affects everyone differently. 

There are common sub-conditions: Ocular MG, which affects just the eyes and causes double vision and eye drooping, and Generalized MG which causes more widespread weakness. Many people with generalized MG have weakness in their limbs that makes it difficult to stand, walk, and lift their arms above their head. As someone’s symptoms worsen during a flare, they may have trouble talking, chewing, swallowing, and even breathing – this is called a myasthenia crisis and can potentially be deadly. 

I am lucky that my symptoms have not affected my limbs too much, and I have also never had a breathing crisis. But my facial weakness – the inability to smile or make normal facial expressions – affected me mentally and emotionally for 25 years. I would avoid talking to people in public if I wasn’t having a strong face day. I would worry that my smile/snarl would come across as sarcastic or just plain weird. 

diagnostic delays

Many people face years of symptoms before finally getting their diagnosis (the average time to get an autoimmune diagnosis is about 4.5 years). I am grateful my path was so short and efficient. 

I have personally known people who have been through horrible, demoralizing diagnostic journeys on their way to an MG diagnosis. A family friend, a man in his 70s, went through multiple eye surgeries that attempted to ‘fix’ his newly droopy eye; but since the eye was drooping due to MG muscle weakness, these surgeries were ineffective and frankly totally inappropriate – his ophthalmologist should have known that MG could be the cause of a droopy eye. 

Another friend has faced extreme medical gaslighting because she is one of the 10% of MG patients who do not have detectable biomarkers that could lead straight to a diagnosis – and she happens to have a mental health history. She has been told over and over that her symptoms are in her head, as she struggled to walk, stand, hold her head up, chew, swallow, and even breathe – classic and dangerous symptoms of runaway MG. 

treatments

Fortunately, there are a few different treatments for MG patients. I’m not an expert in all of them, but I’ve taken a medication called Mestinon for 30 years; I’ve also taken the corticosteroid Prednisone for 25 years. (My doctors are not happy about this, as Prednisone leads to osteoporosis and other side effects, but my body has become dependent on it so I continue to take a low dose daily.) Prednisone is one of many immunosuppressants, drugs that reduce the immune system’s activity and therefore reduce autoimmune symptoms. I take another immunosuppressant called Cellcept, which was originally used in organ transplant patients. 

Even with these three drugs, my symptoms were still noticeable and interfered with my daily life. Finally, in 2017 I started IVIG – IV Immunoglobulin infusions. Within a few days, my MG symptoms were simply gone. I had a strong smile for the first time in 25 years. My voice strength came back, and my eyes felt more ‘open.’ I felt more alert. I could fully participate in yoga classes, and my arms and legs quickly became stronger. Now I get home infusions (administered by my awesome home infusion nurse Amy) two days per month, for five hours each day. 

Finding a treatment that works has been life-changing. I’ve had more strength and energy at work, and finally don’t have to worry my voice will give out when I’m giving presentations. My inner extrovert has finally been released: I am happy to stop and talk to any friend or acquaintance at any time! 

So life is drastically improved for me (though I still deal with rolling symptoms from my other autoimmune condition, Sjogren’s Syndrome, and allergic symptoms resulting from Mast Cell Activation Syndrome.) 

IVIG has worked for me, but it doesn’t help everyone. Many people continue to try different treatments without fully resolving their symptoms. Right now, there are some new MG drugs being released – I feel hopeful that patients like me will have lots of options and that more folks will find something that works for them. 

community 

I haven’t really been an active part of any MG communities. Since I got MG when I was 13, and the condition mostly affects older people, it was hard for me to identify with others at the MG support groups I attended. I did travel to Miami one year to attend the Myasthenia Gravis Foundation of America’s annual conference, and I met lots of other young people there; the experience was really important to me and helped underscore just how different each person’s symptoms are. 

tips for other MG patients

Find a doctor who listens and who understands MG. My neurologist, Michael Hehir at the University of Vermont Medical Center, always makes time to answer my questions and is up-to-date on best practices and treatment options for MG. It’s a huge relief to know I have a doctor I can count on. 

My first neurologist gave me a tip that I’ve used many times: If you’re having double vision due to MG, wear an eyepatch or put a piece of scotch tape over one lens of a pair of glasses. This effectively limits your vision to one eye and makes it easier to get through your day.

Watch out for magnesium. This supplement can be helpful for many, but it can also flare MG symptoms. I’ve re-learned this recently.

Stress and lack of sleep are big symptom triggers for me, and I suspect they are for others. Stress management is one of the best things we can do for ourselves. 

It’s worth playing with dietary changes to see if this helps your symptoms. I have found that my autoimmune symptoms calm down when I avoid foods that have dairy and gluten. But each person’s food triggers are different.

And of course, be kind to yourself and meet yourself where you are! With autoimmune conditions, we don’t know what each day will bring. 

The post Myasthenia Gravis Awareness Month appeared first on Mighty Well Journal.

Diversity inclusion in the workplace can have benefits for all involved.  Not only does it make our society more equitable, but having diverse perspectives – and listening to those voices – is good for business.  We all bring different experiences and strengths and are mightier together.

Wanting to be more inclusive is wonderful, but hiring more diversity without shifting the culture and setup of your workplace can actually be harmful, as the new employees may find themselves in situations that do not meet their needs. If creating an inclusive work environment feels overwhelming, that’s ok! Change is hard, especially when unsure of the best way to go about it.

As a company led by patients with disabilities, we know what it’s like to find the right work environment.  We’ve written about searching for jobs that fit your needs and advocating when needs aren’t met. But the heavy lifting doesn’t need to be all on employees!  If you are an employer wanting to make your own business more inclusive for folks with chronic illness and disabilities, here are some tips to get you started:

1. Job sites focused on disability inclusion in the workplace.

Inclusion of employees with disabilities may seem trickier than the inclusion of folks of diverse races or genders.  Some employers worry that this may mean disabled workers won’t be able to do a good job.  It’s true that, by definition, our disabilities may make aspects of a traditional job difficult, but that does not mean we are any less capable or valuable than abled employees.  We all have strengths and weaknesses.  Someone unable to access a second-floor office may be an outstanding leader.  Someone with a compromised immune system who needs to work from home at times may be incredibly efficient.  Someone with hearing impairments may be uniquely creative.  The label “disabled” does not actually tell you anything about an employee’s potential.  In fact, the only thing it does tell you is that this individual has had to find their way in a world that is often not accommodating; this need for frequent workarounds creates tremendous resilience, problem-solving, and communication skills – all extremely valuable in a workplace.

This understanding that people with illness and disabilities are uniquely capable workers was the foundation for Chronically Capable, an organization that helps connect sick and/or disabled job seekers with inclusive employers.  It was founded by Hannah Olson, a disabled Lyme-warrior who knew her potential was much more than what she could bring to an unaccommodating workplace.  It works like other job listing sites, but more than just searching for skill sets, resumes, and job descriptions, Chronically Capable asks its users about specific accommodations – can you offer flexible hours? Remote work? Visual aids?  Even better, Chronically Capable provides education and resources for employers, so not only can you attract jobseekers by displaying which accommodations you are able to provide now, but they can make your journey to becoming more inclusive much easier.

2. Explore accommodations for disability inclusion in the workplace

Ok, so you want to be more inclusive and are willing to learn what that might mean for your company. Still, the legal side of providing the necessary accommodations for folks with disabilities have you feeling nervous.  That’s ok – if the ADA (Americans with Disabilities Act) is not familiar, this resource can help you navigate its nuances.  Nervous about holding conversations with your employees about what “reasonable accommodations” might look like?  Here is a guide to help you think things through before a meeting with a disabled employee.  And finally, here is a list of potential accommodations that can help you think outside the box!

3. Small steps can make a big difference for disability inclusion in the workplace

If you have not lived with chronic illness or disabilities, you may feel overwhelmed when considering how to accommodate the vast array of disabilities employees face.  The good news is that there are many small steps you can take that make a massive difference.  Not only that, but most of these tweaks can benefit all employees – not just those with relevant disabilities!  For example, written agendas sent before meetings may help people with brain fog or hearing impairments; they are also good for introverts.  Here are a few examples:

• Live captions on zoom calls and videos
• Spaces with different lighting/noise-level options and scent-free spaces
• Seating (and standing) options
• A refrigerator can help with tricky food needs, medications, or breastfeeding moms
• Accessible presentations
• Remote work options

4. Disability inclusion in the workplace

The Covid-19 pandemic has held a magnifying glass to the gears that keep our society running.  While it has come with significant pitfalls, many people with illness and disabilities have actually found their needs are better met since 2020.  Remote work allows us to be in our own space with all the supplies and accessibility we need.  It also tends to allow for a more flexible schedule, so anyone who benefits from naps, daytime IV infusions, or frequent meals no longer has to make these needs visible.  We can work lying down or in comfortable clothes. 

We know these changes are possible.  Now is the time to make these options available even when not in lockdown.  Yes, working in person can benefit collaboration, morale, informal check-ins, etc.  But having the option for remote work when it’s not necessary opens the doors to many who would otherwise be unable to meet their potential.  For folks with conditions that come and go, being able to work remotely during a flare could mean the difference between continuing to work vs. having to take a leave of absence.  Note that, like all accommodations, it is likely that abled employees will benefit as well.  Parents may appreciate being able to work from home when their kids are sick.  People with long commutes may get more done if they do not have to waste an hour to navigate transit.

Not only are our workplaces in a state of flux from the pandemic, but we also have a worker shortage.  Advertising that you value disability inclusion in the workplace – and using this fluctuating time to shift your environment to be inclusive – can give you an edge in attracting the talent you want.

The post 4 Tips to Foster Disability Inclusion in the Workplace appeared first on Mighty Well Journal.