HEALTH:
What are rare diseases? A rare disease is a disease that affects very few people on an average of one patient per 200,000 people. There are about 6,000 rare diseases known worldwide. More than 300 million people worldwide living with rare disease, equivalent to 5% of the world’s population, about 75% of rare diseases are seen in children.
Causes of rare diseases Seventy percent of the rare diseases are caused by genetic disorders and most patients are children. These rare ailments have no cure. About 30% of children with rare diseases die before the age five due to a lack of health care to control the various opportunistic infections that affect children.
These effects are most evident in developing countries including Zanzibar and Tanzania in general where there are low possibility of getting data, accesses, low community awareness and decision-makers concerning with these rare diseases.
These diseases can affect any part of the body but soon many of its effects are seen on the nervous system, muscles and brain. In that sense neither Tanzania nor Zanzibar itself has the exact figures for this type of disease it is possible there are many patients dying unknowingly.
What causes rare diseases?
The exact cause of many rare diseases is unknown. For those whose causes are known, much depends on mutations in genes.
What are the symptoms and signs of a rare disease?
Speaking to Lecturer at the School of Health and Medical Sciences (SUZA) Physiotherapist Lailat Juma Sharif said the symptoms and signs of people living with rare diseases vary depending on the type of disease itself. He said some of the symptoms are as follows
Their overall growth rate is impaired, and the baby’s development deteriorates, the body’s immune system, the abnormal appearance of the baby, losing weight or weight gain without any disease, poor nutrition, infection due to small injured and painfull after minor ailments for example severe bleeding after a minor injury as well as delayed speaking. Similarly, Ms Lailat said children of this type often do not like to mix with other children.
Some challenges from children with rare diseases?
A mother of a child with a rare disease for more than 10 years now Sharifa Mohammed Mbarak said that, the biggest challenge they face that not knowing exactly what illness they had with Ali as finding solutions to their illnesses The sufferers are half the treatment she has said.
Sharifa added that the existing health care and social support services were designed for patients with common ailments and did not take into account the needs of critically ill patients. Sharifa also went on to say that lack of awareness leads to patients and families being denied care in hospitals, schools and communities.
The lack of donors, even if there is a small base for research and rare diseases in the country, limits the hope for policy change and increased investment, he said. Sharifa went on to say that due to the lack of emotional counseling for the family it is recognized as one of the most important missing elements in care and support, if there was no counseling it could help the family on the upbringing of a child affected by a rare illness.
Most of its effects are seen on the nervous system, muscles and brain. In that sense neither Tanzania nor Zanzibar itself has the exact figures for this type of disease it is possible there are many patients dying unknowingly.
What causes rare diseases?
The exact cause of many rare diseases is unknown. For those whose causes are known, much depends on mutations in genes.
What are the symptoms and signs of a rare disease?
Speaking to Lecturer at the School of Health and Medical Sciences (SUZA) Physiotherapist Lailat Juma Sharif said the symptoms and signs of people living with rare diseases vary depending on the type of disease itself. He said some of the symptoms are as follows
Their overall growth rate is impaired, and the baby’s development deteriorates, the body’s immune system, the abnormal appearance of the baby, losing weight or weight gain without any disease, poor nutrition, infection due to small injured and painfull after minor ailments for example severe bleeding after a minor injury as well as delayed speaking. Similarly, Ms Lailat said children of this type often do not like to mix with other children.
Some challenges from children with rare diseases?
A mother of a child with a rare disease for more than 10 years now Sharifa Mohammed Mbarak said that, the biggest challenge they face that not knowing exactly what illness they had with Ali as finding solutions to their illnesses The sufferers are half the treatment she has said.
Sharifa added that the existing health care and social support services were designed for patients with common diseases and did not take into account the needs of critically ill patients. Sharifa also went on to say that lack of awareness leads to patients and families being denied care in hospitals, schools and communities.
She also The lack of donors, even if there is a small base for research and rare diseases in the country, limits the hope for policy change and increased investment” Sharifa added.
She said, due to the lack of emotional counseling for the family it is recognized as one of the most important missing elements in care and support, if there was no counseling it could help the family on the upbringing of a child affected by a rare illness.
In addition to all the challenges explained above in mainland Tanzania, the successes have been achieved, she said fortunately Ali Kimara has become the first student to be enrolled to study at home and already and rarely ill have been given priority in the special education strategy as well as guidance for the whole country so that others can study at home rather than studying in the class.
The President of the United Republic of Tanzania, Samia Suluhu Hassani also addressed in parliament when she listed the priorities to the society including rare diseases, so they have already been listed in the budget for 2021/2022.
What problems are associated with rare diseases?
These diseases are chronic and persistent, about 70% appear first in childhood. These diseases cause disability and poor living conditions, due to lack of education, knowledge and research concerning with these diseases, many of the rare diseases are still undiagnosed, often, and people associate these diseases with superstitious beliefs.
The disease tests for said to be very costly, so management of opportunistic infections, for those rarely curable diseases, its treatment is costly.
How can we help children with rare diseases in the country?
Lailat said is a Lecturer at the School of Health and Medical Sciences (SUZA) said, this kind of people will be able to help them by doing a rehabilitation which will include physiotherapy, the use of body parts to help them do small tasks that are useful to them.
What is the treatment for those with rare diseases?
Nasra Suleyum who is a specialist pediatrician at Mnazi Mmoja Hospital says the rare treatment is still a mystery to the uninitiated as it has its challenges. She said the treatment of a rare ailment was not curing the babies but to alleviate the pain so that the baby could get better.
She added that the diseases took very long time which can risk the life of child with a rare disease depends on the level of treatment the child can receive. Dr. Nasra said it is a continuation of the treatment of opportunistic infections that can improve the lives of these children. Dr. Nasra said it is important to continue to get some of their needs such as access to quality education in a safe environment, specialized treatments such as exercise and speech therapy, machines and equipment for home use.
Salama Makame Pandu who is also a specialist dermatologist from Mnazi Mmoja Hospital said apart from the fact that this rare disease is unknown and do not know the cure for it but the community should abandon the perverse tradition, which is a huge challenge in our society.
What do the victims of rare diseases say?
Speaking to Zahra Said Waziri aged 23 she’s also a third-year diploma graduate student from the School of Health and Medical Sciences at the State University of Zanzibar (SUZA) who suffered from Multiples sclerosis only after entering the second semester. Zahra says that the disease has taken her by surprise away from all the tests that have been done and are ongoing and yet the cause has not been identified. In addition to her illness, she said she still learning to use his bicycle.
While Getrude Elias Maruma who is 26 aged during with her conversation with this feature writer she said, she suffering from a rare disease called Myasthenia Gravis (MG)s she said she has been living with this rare disease for 23 years. Getrude is staying in Dar es Salaam also saids she has found and continues to experience Challenges such as delayed diagnosis of a type of illness that lasted 7 years which is what really bothers her.
She added that other challenges are access to health care, the cost of tests and treatment is very high and some medical insurance is not covered.
“Some important drugs become very difficult to find sometimes it is until they are imported” She said.
She said say that sometimes getting specialized doctors is very difficult as if she is not in Dar es Salaam she faced hard time to find a doctor who can help her timely.
She mentions the challenges she faced in her society, Gertrude said the biggest problem is living in a society where everyone has their own answers, she said.
“This thing hurts so much and sends parents to hide their sick children and for adults let us see ourselves as a burden in society”, she said.
She advice to the government that to help those who suffering with rare diseases especial in treatment because not everyone can afford the treatment, she added through NHIF health insurance she advice there should create a special fund for people with rare diseases so that they can get good and reliable treatment.
She ended by said most of medicine which are used by people with rare diseases are orphan medicines which its availability is difficult and very expensive.
Advice to the government
Government should help in educating the community about rare diseases through seminars, advertisements and various articles. The Ministry of Education can add as a topic to science subjects for primary and biological schools for secondary schools that will teach students about rare diseases such as AIDS and some other diseases.
Advice to the society
Community including citizens, parents and families need adequate education to ensure they cure the children by taken them to hospital and receive appropriate counseling and health care at a time.
On the part the Government and non-governmental organizations should provide education to eradicate stigma against children / people with rare diseases in the community.
Also Communities should be prepared to receive education about the disease and reduce superstitions and superstitious beliefs.
Advice to patients
Living with rare illnesses is not death. This disease should not make people feel inferior because they also have a lot of intelligence and great talents. Let us not give up and continue fighting for our unity until our voices are heard. Together our voices will be strengthened and will reach many parts of the world.
General advice
There is a great need for policies and regulations on rare diseases to ensure the availability of tests, medicines and supplies for these children are readily available, along with testing for these diseases in children immediately after birth can simplify treatment for those diseases. Treatable and reduce the effects of these diseases on children especially for the incurable. In addition, to educate the community about these diseases to overcome superstition and stigma as well as to establish special groups for families with children with rare diseases for the purpose of educating, sharing experiences and comforting each other.
