Chronic Conditions

A chronic disease is a disease that accompanies the patient for a long period of time, sometimes for many years or even for the rest of their life. It is a non-contagious disease that affects some function in the body or a specific organ, and subsequently, may affect the patient's quality of life.

Chronic diseases do not only affect adults but also occur in children and can challenge the normal course of life. The disease sometimes affects physical or mental development and can even create emotional problems. Dealing with a chronic illness impacts the entire immediate family, but with the right tools you can reduce the consequences and enjoy a relatively calm life.

In most cases, the disease is invisible, creating even more difficulties in coping with the outside environment and in recognition of the presence of the disease.

Chronic Diseases in Children

Chronic disease falls into various groups, the main ones being:

• Respiratory diseases such as asthma.
• Neurological diseases such as epilepsy,
• Genetic diseases such as Cystic Fibrosis (CF).
• Endocrine diseases such as juvenile diabetes – Type 1 diabetes.
• Immunological diseases such as Crohn’s Disease and colitis.
• Malignant diseases such as cancer.
• Metabolic diseases such as Pompe Disease and Gaucher Disease.
• Birth defects that cause chronic medical problems such as significant defects in the heart and kidneys.

Treatment

As parents, we want the best for our children, so it is important that we first feel that they are receiving the appropriate medical treatment for them and that they are in good hands, so that we can trust the attending professionals and cooperate with the course of treatment.

Each chronic disease manifests differently and has different treatment options, but it is important to remember that there is usually no complete cure. The treatments typically focus on the symptoms that arise during a flareup of the disease and aim to balance the patient's condition and improve quality of life.

It is critical to undergo regular monitoring at the treatment clinic, but also allow the child to live as full and normal a life as possible.

Physical Coping

Living with a chronic disease can be challenging and dynamic. A patient with a chronic disease can have turbulent periods in which the disease rears its head and flares up, intermingled with periods of symptom-free remission. The symptoms of chronic disease present themselves at varying levels of intensities in different patients, manifesting as pain, fatigue and weakness, the need for medical treatment and various physical disabilities.

It is important to remember that chronic diseases are often invisible, so the patient's difficulty is not always understood or given enough space.

Emotional Coping

Because chronic disease is a long-term illness, it sometimes affects not only the body, but also the soul. Dealing with the disease may trigger emotional difficulties and feelings such as anxiety, fear, frustration, and even depression. It is important as parents to be aware of the impact the disease has on the child’s body image and self-confidence. At the same time, we may also experience difficulty, mental distress, feelings of guilt, fear and helplessness, so it is important that we know how to take care of ourselves as well, to be available for emotional support for a child who needs us.

Exhaustion of Rights

You should become familiar with the benefits owed to you under the law so that you can exhaust your rights.

According to the law, a person is defined as having a chronic disease when they satisfy one of the following three conditions:

• Receives on a monthly and continuous basis treatment with a regular medication.
• Patient with a disease from a list of chronic diseases from the Ministry of Health.
• Receives a medical prescription for one or more medications for a period of at least six months.

These are some of the benefits to which children with chronic disease are entitled to:

• Establishment of a maximum monthly amount (limit of the co-pay) in the HMO for the purchase of medications found in the health services basket, including medications not designed to treat chronic disease – any amount beyond this is exempt from payment. For more information see the Kol Habriut website.
• Some of the chronic diseases entitle children to disabled child allowance. In addition, parents of children who receive the disability allowance are also entitled to receive a larger number of sick days for their child’s treatment.