Travel for Mitochondrial Disease

Mitochondrial disease is an ailment that happens when the structures that produce energy malfunction. The function of the mitochondria is to generate energy while burning food and oxygen and when that is abnormal, it is termed as mitochondrial disease. There is no specific treatment for the disease apart from physiotherapy. It is an inherited chronic illness.

If you happen to travel for the treatment of mitochondrial disease, you would have to carefully plan out your travel expenses and the journey. You have to decide for the treatment center and hotels to stay for the treatment of mitochondrial disease. Be sure to take up the appointment in advance for the treatment of mitochondrial disease, so that you do not face any trouble.

If you already know where you will be going for the treatment of mitochondrial disease, or a consultation or a second opinion then click here to plan your travel. Otherwise, click here to get the information about facilities that specialize in treating mitochondrial disease.

If you cannot afford travel for medical treatment, please consult our directory of charitable organizations that can help arrange no-cost transportation for you.

For more information: (links to the section below)

  • About Mitochondrial Disease
  • Where to go for Mitochondrial Disease?
  • Mitochondrial Disease Treatments
  • Risks associated with Mitochondrial Disease
  • Who can go for the treatment?

 About Mitochondrial Disease

Mitochondrial disease happens when mitochondria, the powerhouse of every cell in the body fails to function properly. It includes a group of neuromuscular disorders caused by damage to the mitochondria. Mitochondria are responsible for creating 90% of the energy that a body needs to sustain life and support multiple functioning of the body organs.

If mitochondria fail to function, less energy is produced within the body organs following cell injury and even cell death. If the process is followed out throughout the body, the body organs seemingly begin to fail. Body organs such as heart, lungs, brain and muscles require the most amount of energy and are the most affected areas of the body.

There can be many types of mitochondrial disease and has the potential to be inherited in every possible way. Mitochondrial disease is the difficult one to diagnose as the effect is different for different individuals. Even though, mitochondrial disease largely affects children, however, nowadays adult onset is also at large visibility.

Where to go for Mitochondrial Disease?

In USA there are various facilities that can offer treatment for mitochondrial disease, if you have already determined your child’s symptoms from early stages. As there are more precautions and management rather than the treatment, quite many hospitals cater to the treatment of mitochondrial disease.

The following health care facilities would help you largely deal with the diagnosis and treatment of the syndrome:

  • Coming Soon

As there is no reliable and consistent means of diagnosis, if you have any sign related to mitochondrial disease, you should definitely fix up an appointment with any health care center that is easy for you to travel to. There are only a few physicians who are experts in the treatment of mitochondrial disease.

Mitochondrial diseases are unpredictable and can have symptoms occurring day by day and time by time without any prior signs. The aim of any health care facility or a physician would be to improve the quality of life for a particular patient.

Mitochondrial diseases are hard to diagnose. In this case, referral to an appropriate research center is important even if you have to travel far away for it. Many hospitals do not have a metabolic laboratory and therefore are limited to the basic tests. Even if some hospitals do not have the laboratories, they can send in the specimens to some other laboratory in the country. So, you have to make this sure before travelling for the treatment of mitochondrial disease.

In order to diagnose if an individual is having mitochondrial disease or not, the health care providers provide tests on a tissue with mitochondria in it that being the muscle tissue.

Muscle Biopsy is not 100% accurate but still is a precise method to diagnose mitochondrial disease. A small of piece of muscle, generally the size of a finger is taken up from the thigh of a patient for the testing. This process does not cause a permanent damage but does leave a scar on the thigh.

The testing is complicated and can take several weeks for the results. The test results show whether an individual is able to produce enough energy for the body organs to function or not. Once the tests declare that a person is indeed suffering from mitochondrial disease, then he or she is tested every year for the problems related with this ailment like diabetes and thyroid disease.

Mitochondrial Disease Treatments

As such, there has been no cure associated with mitochondrial diseases so far. Physiotherapy and medications for the symptoms are by and large the treatments suggested by the doctors. The treatment mainly revolves around vitamin, supplement and co-factor therapy that helps to increase mitochondrial function and to decrease the signs and symptoms of the disease.

During the treatment of mitochondrial disease, nutrition intake, hydrated body and energy conservation are important aspects.

  • Ketogenic Diet- A special high-fat, low carbohydrate diet that helps in controlling seizures that some individuals with mitochondrial disease suffer from. Some of the patients already have their own diet because they know what kind of food products their body adjusts to. It is suggested that without consulting your physician or a dietician, one does not have to make any changes in their diet. Patients should never adapt to fasting or going for prolonged period of time without eating anything.
  • Supportive Therapies- Some individuals with mitochondrial disease might need additional supportive therapies like physical therapy, speech therapy or respiratory therapies. These therapies might not reverse the disease process but can help in improving the present state of the patient in terms of functioning, mobility and strength.
  • Avoidable Toxins- Alcohol and cigarettes have been known for hastening the process of mitochondrial diseases. Smoking can make the condition worse. MSG (monosodium glutamate) has been known since years to cause severe migraine headaches in healthy people since years. MSG intake can be much worse for the patients of mitochondrial disease. One needs to read the label of every canned and Chinese food before taking it up.
  • Vitamins and Supplements- Vitamins and co-factors are needed for the chemical reactions in the body that creates energy to run efficiently. The co-factors are natural substances that a body can make but the vitamins cannot be produced by a body so they have to be ingested in the form of pills or food products. These treatments should be taken in the guidance of your physician.
  • Physical Exercise- Exercising is a great way for a healthy living. For the patients of mitochondrial disease, it is advised that they should have physical activities like aerobics for 20-30 minutes for 5 days a week that helps in improving the function of cardiovascular muscles.

Risks associated with Mitochondrial Disease

Mitochondrial disease has an increased risk of infection among the patients. Ancillary investigations, comprising of laboratory tests, imaging, exercise testing, and electromyography (EMG), may be constructive to classify patients at highest risk for mitochondrial disease before performing a muscle biopsy, and to progress the diagnostic yield of this invasive procedure. The major risk factors of mitochondrial infection include:

  • Specific immunologic deficiencies like neutropenia in Barth syndrome and Pearson syndrome
  • Non-specific immunologic deficiency
  • Foreign substances like central venous lines and ports
  • Risk of aspiration from gastroesophageal reflux and/or neurologic disease or oropharyngeal incoordination
  • Fatigue/weakness in pulmonary musculature
  • Gut dysmotility with bacterial overgrowth and microbial translocation from the gut
  • Diabetes mellitus

Who can go for the treatment?

Mitochondrial disease is a chronic, genetic disorder that can occur in either children or adults. Whenever the disease is diagnosed, one should immediately rush for the treatment even though there’s no specific treatment option available. The incidence rate at which the disease occurs in individuals in USA is 1 in every 4000 cases. This is almost similar to the incidence of cystic fibrosis of Caucasian births in the U.S. each year about 1000 to 4000 children in the United States are born with the mitochondrial disease.

Symptoms of the mitochondrial disease vary with each diagnosed person. The symptoms differ according to the cells of the body that are hampered with. The symptoms can range from mild to severe, involve one or more organs and can happen at any age. With this kind of uncertainty, the symptoms of mitochondrial disease can be misjudged for some other disease too. The below mentioned ones are the most common symptoms associated with mitochondrial disease.

  • Poor or underdeveloped growth
  • Muscle weakness and pain
  • Vision and hearing problems
  • Seizures and strokes
  • Inability to walk or talk
  • Autism or autism like features
  • Heart, liver, lung or kidney diseases
  • Diabetes
  • Thyroid problems
  • Respiratory problems