Tuesday, May 18, 2021

A Caregiver's Perspective: Living with Hypereosinophilic Syndrome


Seven years ago, I began this blog to share what it was like to live with rheumatoid arthritis, which I had just been diagnosed with, and to offer hope to those living with chronic illnesses. Since then, my condition has improved greatly. I still have to live with multiple chronic illnesses - RA, chronic migraines, hypothyroidism, psoriasis and seizure disorder - but all of them are, by in large, well managed by daily medication and lifestyle choices. I don't drink or smoke, I avoid certain foods that can trigger flares, I exercise regularly and I manage my stress. All of this, combined with my steadfast faith in God, has helped me to live a normal, happy life despite my health conditions. I am very fortunate in that most of the time, I don't even think about them!

What I have been thinking a lot about for the past year is a condition my daughter has been diagnosed with, which is called Hypereosinophilic Syndrome (HES). Yes, that's a mouthful, and it doesn't get any easier to spell or pronounce over time! It is also hard to describe to people, because it is a rare disease that can affect people in different ways. Like RA, it is an invisible illness, it is progressive, incurable and can be fatal if left untreated.  

Many people who have HES go undiagnosed for years. It is related to the allergic response system in the body, and yet not everyone who has allergies will develop HES. Eosinophil levels may be high in people with asthma and eczema, but usually not high enough to be considered hypereosinophilia. (The normal level of eosinophils is 0-500, eosinophilia is 500+ and hypereosinophilia is 1,500 +) My daughter J has had food and environmental allergies, eczema and asthma for most of her life, and yet it was not until she had a blood test for an unrelated infection that we discovered her eosinophils were over 1,500. Even then, the doctors cautiously waited and watched her numbers for a solid year before diagnosing her with HES. This is not a lightweight disease. The treatment options are long-term steroids, chemotherapy drugs, and biologics, the latter of which have only been available recently.

The biggest clue to J's condition was not her increasingly worsening eczema and asthma, but rather J's depleted energy level. A naturally gifted athlete, our daughter has participated in a number of sports, from competitive ice skating to volleyball, track and lacrosse. She was used to early morning practice sessions and games after school. It was unusual, then, for her to have to be dragged out of bed in the morning and for her then to be crawling back under the covers when she got home from school. When COVID-19 hit and the schools went online, my full-time job became trying to ensure that she stayed awake during classes, something I didn't always achieve. She went from lacrosse practice several times a week to not having the energy to even walk the dog.

In December of 2020, J's eosinophil level skyrocketed to 4,500. To make sure it wasn't a fluke, she was tested again a few weeks later and her numbers were over 3,200. In addition to all the regular blood tests we were already getting done, she was sent to a cardiologist, neurologist, and dermatologist for additional tests. After establishing that she did not have any underlying condition that could be causing her elevated eosinophils, she was diagnosed with idiopathic HES. Last month she began treatments with a biologic called Nucala.

While my daughter has always had various health conditions that required some degree of management, this past year has given me new insight into what it is to be a caregiver of someone with a serious chronic illness. Having RA, which also comes with fatigue, has given me an appreciation for her inability to participate in activities at the level she was used to. I knew she wasn't being lazy or insolent when she said she was too tired to do something; or when she went to church and Mother's Day brunch without makeup and did her best to smile and be polite, but didn't have the energy to be very social. As her mother, I was just appreciative of her being there with me.

I have shared J's fatigue of medical appointments. I don't know how many miles around the greater Houston area we have driven for all of them, but they have literally spanned from The Woodlands in the north to Katy in the west, to Clear Lake in the south. We are in the Medical Center every month to see her hematologist at Texas Children's Hospital Cancer Center. To say that we are grateful her allergist/immunologist's office (where she has to go once a week) is close by our house is an understatement. 

School is another issue we have both had to deal with. We are grateful to have a great administrative team at her high school who supported our efforts to put a 504 Plan in place and granted accommodations for J. Between COVID and J's HES, this has not been a stellar year academically, but we have high hopes for the future.

Side effects from treatments vary. After J's first treatment with Nucala, she said she felt like she had run about 200 miles. Her exhaustion was all day, every day for over a week. After that, her energy level perked up until a few days before her second treatment, when she began to feel the fatigue of her HES return. Fortunately, her second treatment went well and the extreme fatigue from it only lasted about a day. 

With two treatments under our belt, it is wonderful to see J starting to thrive again. She is pushing herself hard to pull up her school grades and finish the school year strong. She is looking forward to summer and hopefully will be going back to lacrosse in the fall. I found a great HES support group online and made friends with a sweet young woman who has connected with J. Yes, chronic illness is challenging and has its ups and downs, but God is good and life goes on. Here in the Perkins family, we are keeping the faith!

For more info on HES, click here for a handy printable brochure

Peace, love and joy to you today,


A Caregiver's Perspective: Living with Hypereosinophilic Syndrome originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. 

Wednesday, January 27, 2021

Rest for the Weary

Image by <a href="https://pixabay.com/users/giuliamar-34680/?utm_source=link-attribution&amp;utm_medium=referral&amp;utm_campaign=image&amp;utm_content=330869">Giulia Marotta</a> from <a href="https://pixabay.com/?utm_source=link-attribution&amp;utm_medium=referral&amp;utm_campaign=image&amp;utm_content=330869">Pixabay</a>

 "Come to me, all you who are weary, and I will give you rest." - Matthew 11:28

I planned to write this post at the end of 2020. It was a long year, wasn't it? We thought it couldn't get worse. Yet, here we are in 2021 and there are still major upheavals in our lives due to the COVID-19 pandemic. In the United States, we have a new president and while some are happy about that, some are clearly not, as evidenced by the violent storming of the Capitol by extremists on January 6 and the subsequent impeachment of Donald Trump. Sigh. Drama, drama, drama. Whichever side you're on, the daily news is pretty exhausting most of the time. Add in a dose of chronic illness (with the fear of getting even sicker thanks to the coronavirus) and it can be pretty overwhelming, right?

If it's any consolation, life back in Jesus' time was no less complicated. Throughout the Bible, you find stories of ordinary people caught up in extraordinary circumstances. Famines and plagues were not uncommon. God's people traveled from land to land, sometimes being enslaved or persecuted, while at other times finding themselves wandering around in the desert due to their own disobedience. Jesus' family had to flee the country to protect Him from being executed while He was just a baby, and then He became highly unpopular with the Pharisees, from the start of His ministry all the way through to His crucifixion. Jesus knew that life could be stressful, not just some of the time, but a LOT of the time.

Jesus' invitation to rest in Him when we are weary reflects the prayer of King David in Psalm 23. Verses 1-4 from the New Living Bible say:

The Lord is my shepherd;
I have all that I need.
He lets me rest in green meadows;
he leads me beside peaceful streams.
He renews my strength.
He guides me along right paths,
bringing honor to his name.
Even when I walk through the darkest valley
I will not be afraid,
for you are close beside me.
Your rod and your staff
protect and comfort me.

Do you see here what resting in the Lord means? We not have all we want, but in Him, we have all we need. Like a shepherd tending his flock, Jesus lets us rest when we are weary, while He keeps watch over us. He leads us beside peaceful streams, giving us living water for our parched and thirsty souls. He renews our strength when we feel like we can't go on. He guides us along right paths, giving us discernment and wisdom, direction and purpose, when we aren't sure which way to go. Even when we are in the darkest times of our lives, we need not be afraid, for we know He is close by, there to protect and comfort us.

No matter what you may be facing in 2021, you are not alone. God is with us in Emmanuel. He will walk with you, guide you and protect you, allowing you to rest in His presence while regaining the strength you need to continue on your journey. Do not be dismayed. Do not be discouraged. Do not be afraid. Instead, take courage from the power of His might. And when you are weary, go to Jesus. He will give you rest.

Peace, love and joy to you today.


Rest for the Weary originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. Get even more encouragement by following me on Facebook.