Decoding ALS: A 26-year-old girl with ALS gradually learns to face death

In Huaihua, Hunan, a 26-year-old young woman named Xiao Chen (pseudonym) has become the focus of public attention for her story of fighting ALS. Xiao Chen has recorded in detail her transformation from being healthy and energetic to being unable to take care of herself, once again focusing people's attention on this rare but serious disease - ALS.

After being diagnosed, Xiao Chen experienced the fear of death and the despair of gradually losing her body's ability to move. She once considered giving up her life, but with the encouragement and support of her family and friends, she began to learn to accept death and found a new meaning in life.

What is ALS?

ALS, medically known as amyotrophic lateral sclerosis (ALS), causes progressive muscle atrophy and weakness in the limbs of patients with ALS, and eventually they become unable to move, as if frozen. Therefore, patients are also called "ALS patients". In 2018, the National Health Commission and five other departments jointly formulated the "First List of Rare Diseases", in which ALS was included. According to data, the number of new ALS cases in China reaches 25,000 per year.

Symptoms of ALS usually begin in the hands or legs, manifesting as muscle weakness, tremors or stiffness. As the disease progresses, these symptoms will gradually spread to other muscle groups, affecting speech, swallowing and breathing. Xiao Chen initially just couldn't lift his arms, and mistakenly thought it was frozen shoulder, but later the symptoms worsened and he couldn't take care of himself, so he went to the hospital for a check-up and was eventually diagnosed with ALS.

The pathogenesis of ALS is extremely complex, covering multiple aspects such as genetics, environmental factors and the immune system. About 10% of patients have a family history of the disease. Although scientists have found some gene mutations related to the disease, the unknown area is still vast and needs to be explored in depth. In terms of environmental factors, exposure to heavy metals and agricultural chemicals may increase the risk of disease, but this association still needs more research to confirm. In addition, abnormalities in the immune system may also be one of the causative factors. Once the immune system mistakenly attacks nerve cells, it will cause them to gradually degenerate.

Although ALS cannot be completely cured at this stage, patients can relieve symptoms and delay the progression of the disease with the help of medication, rehabilitation training and appropriate care measures. Medication can effectively relieve symptoms such as muscle spasms and dyspnea. Rehabilitation training covers physical therapy, occupational therapy and speech therapy, etc., with the aim of maintaining muscle function and thus improving the patient's quality of life. As the disease progresses, patients may need to rely on assistive devices and the support of caregivers. The medical community is actively committed to researching and developing new treatments and new drugs in order to bring new hope to ALS patients.

Xiao Chen's story reminds us that encouragement and support from family, friends and professionals can help patients better cope with the challenges brought by the disease. With the progress of medical research, the treatment of ALS is also constantly improving. Gene therapy and stem cell therapy provide new hope for ALS patients.

Let us pay attention to ALS, support ALS patients, and provide them with more care and help!