Stories

My Rare Disease Story: Kimura Disease

May 28, 2025

By Hany Ashraf Mohamed Ali

My name is Hany Ashraf, a 27-year-old electrical technician from Egypt. Since I was seven years old, I have been battling a rare and complicated disease. It all started with unexplained swellings in my neck and behind my ears. Over the years, the symptoms worsened, and I kept moving between doctors and hospitals in search of a diagnosis—but for a long time, there were no clear answers.

Finally, in 2017, I received a suspected diagnosis of Kimura disease, a rare, chronic inflammatory disorder that affects lymph nodes and is characterized by extremely high levels of eosinophils and elevated IgE levels. This condition causes recurring swellings in various parts of the body and is often accompanied by allergic symptoms and respiratory problems, including recently developed bronchial asthma.

I also suffer from chronic inflammation in the left side of my nose, which causes persistent nasal blockage and breathing difficulties. This adds to the constant feeling of congestion, affects my sleep quality, and may be related to chronic allergic responses and immune system overactivity.

In addition to the physical symptoms, I’ve endured emotional and psychological suffering due to harsh family circumstances during my childhood, which has deeply impacted my life.

The only treatment that has truly helped me is Dupilumab (DUPIXENT), which significantly reduced the inflammation and swelling and improved my overall quality of life. However, this medication is extremely expensive, and due to my financial struggles and physically demanding job as a technician, I cannot afford it regularly.

I also noticed remarkable improvements when I followed the keto diet, a low-carbohydrate, high-healthy-fat nutritional plan. It helped reduce inflammation and swelling, boosted my energy, and even improved my mental health.

Additionally, I discovered that completely avoiding lactose and fructose had a major positive effect on my symptoms. These substances caused digestive problems and increased inflammation, so I now strictly avoid dairy products containing lactose and any fruits or juices high in fructose.

Over the years, I’ve tried many treatments—high-dose corticosteroids, cyclosporine, and antihistamines—but none provided lasting stability. Some even caused serious side effects.

Today, I am sharing my story with the rare disease community not just to talk about my struggle, but to:

  • Raise awareness about Kimura disease
  • Request support in accessing life-saving treatment
  • Offer to participate in research or clinical trials that may help myself and others
  • Connect with people who are experiencing the same condition, for support and shared knowledge

I am not seeking pity—I’m seeking hope, understanding, and solidarity to build awareness of this rare disease that affects lives in silence.

 
 

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