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== Sources == <!--מקורות-->
== Sources == <!--מקורות-->
* was based on the [http://www.atlasals.org.il/ ATLAS - The Israel ALS/MND Association website] and the [http://israls.org.il/ IsrA.L.S. - The Israel ALS Research Association website].
* by [[The Shira Pransky Project]].
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Revision as of 11:37, 21 March 2013
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Amyotrophic Lateral Sclerosis (ALS) is also commonly known as Lou Gehrig's disease. ALS is the most severe disease out of a group of degenerative diseases that affect the nervous system. Physicist Stephen Hawking, who has suffered from the disease for many years, has greatly increased public awareness of ALS.
ALS destroys motor nerve cells in the brain and spinal cord and as a result, within a period of three to five years, the body's muscles are severely weakened eventually resulting in total paralysis.
As the disease progresses, the muscles responsible for speaking, swallowing, breathing and performing other vital activities are damaged in an inconsistent and unpredictable order.
Although ALS is a fatal, rare and incurable disease, treatment is primarily focused on quality of life and generally includes physical therapy, as well as therapies for swallowing, speech and breathing, in addition to emotional support. Many different forms of treatment help alleviate the symptoms associated with ALS, which include tightening of the muscles, shortness of breath, saliva build-up, pains, lack of sleep, and emotional distress.
There are also many devices and accessories which help improve the quality of life for those with ALS. Template:מחלה/סיום הקדמה
Medications and the Healthcare System
- ALS patients are recognized as chronically ill and are therefore entitled to an exemption from payment for medications beyond the prescribed monthly limit.
Throughout the world, there are currently several Phase 2 trials being conducted (trials on a small group of patients (30-50) for a period of 3-6 months to research drug tolerance and obtain limited information regarding the drug's effectiveness):
- Topiramate - An anti-epileptic drug, which works by inhibiting the effect of glutamate; other drugs which work using the same mechanism (such as Lamotrigine and Gabapentin) have been tried in the past without success.
- Indinavir - An anti-AIDS drug.
- Celebrex - An anti-arthritis medication; the effect of the drug was minimal in animal trials.
- Minocyclin - An antibiotic that may influence the apoptotic process (programmed cell death) in brain cells; animal trials showed a slight decrease in the rate of deterioration of motoric functioning.
The only expansive trial currently taking place is on the effect of Creatine on ALS.
For more information on the progress of the stem cell therapy trial, see the news item on the right side of this page.
A General Disability Pension is paid to those who are unable to earn a living due to disability. ALS patients are usually defined at 100% disability. If an ALS patient's disability has been defined as lower than 100%, he/she may appeal the medical committee decision. If the patient's condition has deteriorated, a request to change the determined disability may be submitted.
Even patients who currently work and earn a salary should apply for a disability pension, as the process is quite long. Then, if necessary, it will be possible to claim entitlement to the pension in a shorter period of time, as the information will already be in the National Insurance Institute’s system.
For more information, see: Disability Pension and Related Benefits.
The mobility benefit is composed of a series of benefits for those who have difficulty with mobility (walking, driving, etc.). A Ministry of Health committee determines the rate of mobility disability. Based on the determined rate of disability, the patient is entitled to purchase up to an 1800 cc vehicle without having to pay import taxes on the vehicle, through a standing loan which becomes a grant after five years.
Alternatively, the patient may be eligible for a commercial vehicle that is fit for a wheelchair lift. In this case, the patient will pay 20% of the vehicle's price and get the required equipment for free.
ALS patients are usually defined at 100% disability. The type of vehicle (private or commercial), is determined by the patient's medical condition. It is recommended to insist and demand the commercial vehicle from the committee, since doctors are familiar with the development of the disease and it is best to get a vehicle which will suit the patient's needs in the future.
A monthly mobility benefit is paid to the patient, regardless of whether or not a vehicle is purchased, so it is worthwhile to go to the committee in any event.
For more information, see: Mobility Benefit
This benefit is paid to patients who need a lot of help from another person in order to perform daily activities (such as: dressing, eating, bathing and hygiene, mobility in the home). It is recommended to submit the claim for the benefit six months before the patient's condition requires recruitment of a foreign nursing care worker, because the approval process is quite long and the process of bringing a foreign worker requires at least three months. Usually disability for these patients is determined at 150%.
For more information, see: Special Services Benefit
- For someone with disabilities who works, it is recommended to check eligibility for an income tax exemption.
- Local authorities grant municipal property tax (arnona) discounts to those with disabilities.
Assistance for Housing Modifications
Someone with movement or functioning limitations is entitled to financial assistance to pay for internal and external housing modifications or renovations.
Benefits for Disability Pension Recipients
- Disabled parking permit (including eligibility for a registration fee discount)
- Discount on public transportation
- Discount on Bezeq telephone services
- Certificate of eligibility for rental assistance
Designated ALS Clinics
Israel has two designated ALS clinics which are headed by expert neurologists. The clinics perform diagnoses and assessment of patients' level of functioning, provide an inter-disciplinary response while offering ongoing monitoring of patients and symptomatic treatment to improve their quality of life.
In addition, from time to time there are clinical trials for ALS patients in these clinics.
The head of the ALS clinic at Tel Aviv Medical Center (Ichilov Hospital) is Professor Vivian Drori.
The head of the ALS clinic at Hadassah Hospital is Dr. Mark Gutkin.
A social worker from The Israel ALS Research Association (IsrA.L.S.) serves as the social worker in both of the ALS clinics, providing support in the clinic and for patients' families.
A visit to one of the clinics is covered by the patient's health plan after an appointment is made with the relevant Form 17 (a letter of financial obligation from the health plan).
Clinic Contact Information:
- Ichilov ALS Clinic (Tel Aviv Medical Center) Sarah: 03-6973689
- Hadassah Ein Kerem Clinic Tzila: 050-7874692
- ATLAS - The Israel ALS/MND Association
- IsrA.L.S. - The Israel ALS Research Association
- The Society for Patient Rights in Israel - Orphan diseases
- Orphanet Israel - Website about rare diseases and orphan drugs
- Original content was based on the ATLAS - The Israel ALS/MND Association website and the IsrA.L.S. - The Israel ALS Research Association website.
- Original translation done by the The Shira Pransky Project as part of a grant from The Fellowship Fund.
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