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,

Linda

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