Pharmaceuticals – Autoimmune Warrior

Celine Dion Reveals Stiff Person Syndrome Diagnosis

Celine Dion performing during her Las Vegas residency. Image courtesy of CNN.

Decorated Canadian singer-songwriter Celine Dion reveals she was recently diagnosed with a rare neurological autoimmune disorder called Stiff Person Syndrome. The diagnosis has lead her to cancel her summer 2023 shows, as well as re-schedule others to 2024.

According to Yale Medicine, Stiff Person Syndrome is believed to be an autoimmune reaction that occurs when the body’s own immune system attacks and destroys a vital protein called Glutamic Acid Decarboxylase (GAD). This protein is responsible for making a substance called gamma-aminobutyric acid (GABA), which helps to regulate motor neuron cells, and ensure they’re not over-active.

People with low levels of GABA have neurons that continuously fire, even when they’re not supposed to. This results in debilitating symptoms like violent muscle spasms, muscle stiffening in the torso and limbs, and difficulty with walking and movement. GABA also helps to regulate symptoms of depression and anxiety, so those with Stiff Person Syndrome are at a higher risk for developing these mental health conditions.

The 54-year-old Grammy award-winning artist has said that the condition has had a profound impact on her life, commenting: “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”

Getting diagnosed with Stiff Person Syndrome can be a challenge, since the symptoms can mimic many other neurological health conditions, like multiple sclerosis, Parkinson’s disease, fibromyalgia, and more. Patients typically undergo a thorough examination, such as blood tests and spinal fluid tests, to find elevated levels of anti-GAD antibodies, in order to get diagnosed.

Being diagnosed was not a straightforward process for Dion herself. “While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she said.

Although anyone can develop Stiff Person Syndrome, the National Organization for Rare Disorders reports that adults ages 30 to 60 are most commonly diagnosed with the condition. The condition is considered rare, with only one in a million individuals being diagnosed with SPS among the general population.

There is no cure for Stiff Person Syndrome, but treatments like steroids to control inflammation, plus the use of sedatives and muscle relaxants to control muscle spasms, can help. Sometimes Stiff Person Syndrome patients are also prescribed immunotherapies to help calm an over-active immune system that’s destroying their GAD proteins.

In an emotional video on her Instagram, Dion said, “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again. But I have to admit it’s been a struggle.”

To learn more about Stiff Person Syndrome, visit the SPS Research Foundation’s website.

Podcasts Every Chronic Illness Patient Should Listen to

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Back in 2019, I wrote a blog post about my favorite autoimmune disease YouTubers. These are YouTube channels that I personally follow as they document life with a chronic illness.

As a follow-up to that blog post, I wanted to share my favorite podcasts on the topic of managing life with a chronic illness. Although I still do watch YouTube videos fairly frequently, I also enjoy listening to podcasts since it’s so convenient to tune into a podcast while I’m working, doing chores, driving etc. without having to watch something visual.

So, without further ado, here’s my list of chronic illness podcasts that I enjoy listening to!

1. The Chronic Illness Therapist

The Chronic Illness Therapist is a podcast run by Destiny Winters, a licensed therapist in the Atlanta, Georgia area. Destiny has several chronic illnesses herself, including Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), and Mass Cell Activation Syndrome (MCAS). Since she’s both a therapist and a chronic illness patient herself, Destiny understands the impact that managing an illness can have on a patient’s mental health.

As part of her podcast, she delves into a number of challenges that chronic illness patients face, including:

Medical gaslighting and questioning one’s own sanity
Lack of support or understanding from family and friends
Coping with pain and other difficult symptoms
How to live a meaningful and full life while battling illness
Adverse childhood experiences and the mind-body connection
Grief and acceptance

I have found all of these topics to be relevant to my own life, and I think that many readers would find the same. Plus, I highly appreciate her perspective as a therapist and as a patient, because not many people have both the academic and real-life expertise of both of these roles!

2. Sjogren’s Strong

Sjogren’s Strong is a podcast co-hosted by Lupe, a patient living with the autoimmune condition Sjogren’s Syndrome, and her partner Brian. I first learned about this podcast via their blog, after I was first diagnosed with Sjogren’s myself and was looking for information from other patients. The podcast delves into many subjects specific to living with Sjogren’s Syndrome, such as:

Managing common symptoms, like dry eyes, dry mouth, joint pain, fatigue, and brain fog
Sjogren’s medications, treatments, and medical insurance
Living an active lifestyle with a chronic illness

Although the podcast is clearly specific to Sjogren’s, I think it’s valuable for many chronic illness patients, such as those with Rheumatoid Arthritis and Lupus.

3. The Chronic Ills

The Chronic Ills podcast is co-hosted by Alina and Angelica, two Australian women who talk about living with a chronic illness as young adults in their twenties. Some of the topics they discuss in their podcast episodes include:

Body image with chronic illness
Medication and alternative therapies
The cost of being ill
Living with a chronic illness and anxiety about the global pandemic
Navigating relationships and friendships with a chronic illness
The portrayal of disability in the media

Alina and Angelica have had very different experiences as a chronic illness patients; one of them experienced becoming ill gradually, while the other had a sudden onset of their symptoms. What I like is that they show that not all cases are alike, and that every patient’s story is unique.

Those are the top three chronic illness podcasts that I’m listening to at the moment! Do you have any Spotify podcasts that you would recommend? Let us know in the comments below.

Getting COVID-19 with an Autoimmune Disease: My Experience

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Hey all! It’s been a while since I last wrote a blog post. And the reason for that is…after 2.5 years of this pandemic and being fully vaccinated, I finally got COVID-19.

Getting COVID was one of my worst fears during this pandemic. As someone with an autoimmune condition, I wasn’t sure how my body would react to getting the virus. I had read stories, such as this young woman with an autoimmune condition, who had caught COVID and ended up having to get a lung transplant. It’s really scary since some people report that their symptoms are more of a bad flu, while others end up with crippling long COVID symptoms or worse, end up passing away.

It’s been a few weeks since I first tested positive, and I’m on the mend. My main symptoms were a fever, chills, sore throat, dry cough, loss of taste and smell, fatigue, joint pain, muscle soreness and weakness. As you can imagine, it wasn’t a fun recovery!

My only symptom now, a few weeks post-COVID diagnosis, is a lingering dry cough. I have asthma, and although it’s a very mild form of asthma, it definitely flared up when I got COVID.

I wanted to share some of the things that helped me recover from COVID-19 quickly when you have a compromised immune system. Of course, always talk with your doctor before beginning any kind of treatment plan or modifying your health regiment.

1. Anti-viral medication

The first thing that helped me recover from COVID more quickly was getting on anti-viral medication. The medication, called paxlovid, was developed by Pfizer and is composed of two separate medications: nirmatrelvir and ritonavir. The medication is taken orally as six pills swallowed daily – three in the morning, and three at night.

Paxlovid isn’t available to just anyone, however. You have to be at high risk for severe disease if you get COVID-19. As someone with an autoimmune condition and asthma, I definitely fit that category. I was able to get a last-minute telehealth appointment with a family doctor, and he prescribed me paxlovid, as well as some prescription cough medication.

A clinical trial showed that taking paxlovid resulted in an 89% reduction in the risk of hospitalization and death. So, if you get COVID and you’re immunocompromised in some way, I would definitely talk to your doctor to see if you can get a prescription for paxlovid or another anti-viral medication to help you recover faster.

2. Heating/Cooling Pad

Another item that really helped me recover from COVID was a lavender heating and cooling pad. I’ve talked about using a lavender heating pad in the past on this blog for general muscle aches and joint pains, but it was definitely helpful in recovering from the virus as well.

For example, when I was running a low-grade fever, I was able to put the pad in the freezer to turn it into a cooling pad, helping me cool down when I was running hot at night. When I had bad muscle aches and joint pains, I would heat up the pad in the microwave and within a minute, I was able to get some relief.

There are many inexpensive heating pads that you can find online – for example, I found this lavender heating pad from Amazon for only $12.99. You can obviously get an unscented version if you prefer, but I do enjoy the floral aroma.

3. Humidifier

As someone with Sjogren’s syndrome, having a humidifier is always a good bet, since it makes the air feel less dry and helps moisturize your immediate environment. That being said, it also helped me to feel more comfortable when sick with the virus, since COVID gave me a bad dry cough as well, not to mention I had a flare up in many of my Sjogren’s syndrome symptoms, like eye, mouth, and skin dryness.

The humidifier I use is from the brand Crane, but you can find various humidifiers online in different styles and sizes that will fit your space best.

4. Throat Spray

If you’re like me and you experience a bad sore throat and cough when you’re sick with COVID, then I’d recommend looking into an over-the-counter throat spray to help relieve some of the soreness and discomfort. You can get throat sprays with a numbing agent, like phenol or lidocaine, at most major pharmacies. I ended up picking up this cherry-flavored throat spray from CVS, and it definitely helped me get through some of my worse days.

If you’re looking for more of a natural throat spray, you can try an echinacea throat spray such as this one on Amazon for less than $12. Echinacea is a natural compound derived from perennial flowers, and has been used among Native American populations for its healing properties. That being said, echinacea is believed to work by boosting one’s immune system (like Vitamin C), so if you have an autoimmune condition, just be sure to get the go-ahead from your healthcare provider before taking any herb or medication that could increase immune activity.

Those are the items that helped me the most to recover more quickly from COVID-19. Are you someone with an autoimmune disease or other chronic illness who caught the virus? If so, what helped you to recover? Let us know in the comments below!