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| Posted on Facebook. |
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| Four Case Studies |
Year
|
Total Intake of Pupils
|
Total Intake of CWDs
|
Percentage CWDs
|
|---|---|---|---|
2002
|
1,847,160
|
48,063
| 2.6 |
2003
|
1,914,893
|
51,965
| 3.1 |
2004
|
1,837,277
|
44,866
| 2.4 |
 |
| Four Case Studies |
Year
|
Total Intake of Pupils
|
Total Intake of CWDs
|
Percentage CWDs
|
|---|---|---|---|
2010
| 8,374,648 | 205,018 | 2.4 |
2011
| 8,098,177 | 197,200 | 2.4 |
Year
|
Total Intake of CWDs
|
Percentage CWDs
|
|---|---|---|
2007
|
12,103
| 1.3 |
2008
|
11,145
| 1.0 |
2009
|
13,418
| 1.1 |
2010
|
12,993
| 1.1 |
Councillor William Mwambu (from Masindi District, Uganda) explains how a lack of accurate data on disability greatly affects the way decision makers plan, budget, allocate resources and influence policies.
Table: Child disability and Literacy/Numeracy
The following data is reported in each column:
- Attended or Attending School: Children were asked if they had attended school or dropped out of school, these percentages were added together, reported as a percentage.
- Grade 5 Completed: Children aged 13-17 years old, if they were attending or had attended school, were asked if they had passed Grade 5, that is did they have basic numeracy and literacy, this is reported as a percentage.
- Basic Literacy/ Numeracy: Shows the percentage of CWDs in each disability group, age 13-17 years, that have basic numeracy and literacy and is reported as a percentage.
Attended or Attending School
|
Grade 5 Completed
|
Basic Literacy/ Numeracy
| |
|---|---|---|---|
Difficulty seeing even with glasses
| |||
No difficulty
|
91.02
|
34.67
|
31.56
|
Yes - some difficulty
|
94.47
|
30.59
|
28.90
|
Yes - a lot of difficulty
|
85.30
|
27.37
|
23.35
|
Difficulty hearing even with hearing aid
| |||
No difficulty
|
91.20
| 35.33 | 32.22 |
Yes - some difficulty
|
90.66
|
24.24
|
21.98
|
Yes - a lot of difficulty
|
77.49
|
10.48
|
8.12
|
Difficulty walking or climbing stairs
| |||
No difficulty
|
91.21
|
35.19
|
32.07
|
Yes - some difficulty
|
91.11
|
20.39
|
18.58
|
Yes - a lot of difficulty
|
61.43
|
10.74
|
6.66
|
Difficulty remembering or concentrating
| |||
No difficulty
|
91.20
|
36.64
|
33.42
|
Yes - some difficulty
|
92.39
|
19.39
|
17.91
|
Yes - a lot of difficulty
|
71.36
|
12.12
|
8.65
|
Difficulty with selfcare
| |||
No difficulty
|
91.48
|
35.64
|
32.60
|
Yes - some difficulty
|
89.97
|
16.80
|
15.11
|
Yes - a lot of difficulty
|
41.88
|
0
|
0
|
Difficulty communicating
| |||
No difficulty
|
91.33
|
35.26
|
32.20
|
Yes - some difficulty
|
87.64
|
9.21
|
8.07
|
Yes - a lot of difficulty
|
52.24
|
3.66
|
1.91
|
 |
| When a child with a disability attends school attitudes are changed |
Osteoarthritis: Is normally the result of trauma and is common in old age.Assessing the prevalence of arthritis in Uganda is difficult. There is very little data. This 1970 paper Rheumatoid arthritis in Ugandan Africans opens stating:
Rheumatoid arthritis: Is a long-lasting autoimmune disorder that primarily affects joints.
Gout and pseudo-gout: Gout is recurrent attacks of inflammatory arthritis, pain comes on in less than twelve hours; the joint at the base of the big toe is affected in about half of cases. Pseudo-gout is the accumulation of crystals of calcium pyrophosphate dihydrate in the connective tissues of the joint.
Septic arthritis: Is cause by an infection in the joint.
Ankylosing spondylitis: Is a chronic inflammatory autoimmune disease that mainly affects joints in the spine.
Juvenile idiopathic arthritis: Is the most common form of arthritis in children and adolescents. Idiopathic refers to a condition with no defined cause, and arthritis is the inflammation of the synovium, the covering of a joint.
Still's disease: A rare system inflammatory disease.
Until recently rheumatoid arthritis has been considered to be rare in the tropics. Gelfand (1957), in his extensive review of disease in Africans, stated that he had rarely seen a true case in a native of Central Africa. Goodall (1956) described two atypical cases amongst ninety patients with polyarthritis in Malawi. Since then eight cases have been reported from Kenya (Harries, 1962; Hall, 1966), three from Liberia (Hijmans, Valkenburg, Muller, and Gratama, 1964), 39 from Uganda (Kanyerezi, 1969), and 71 from Western Nigeria (Greenwood, 1969). Lawrence, Bremner, Ball, and Burch (1966) conducted a survey of rheumatoid arthritis in Jamaica (a sub-tropical zone) and concluded that the disease 'occurs at least as frequently as in a Caucasian population in the United Kingdom'.The paper concludes with the following statement:
It is apparent that rheumatoid arthritis is commoner in Ugandan Africans than was previously recognized. It may be that Western Nigeria and Buganda are different from the rest of Africa in having a higher incidence of the disease though Dr. Ojiambo in Nairobi states that more cases have been seen there than have been reported in the literature (personal communication).The paper ends lamenting the lack of good studies and requesting more studies.
- Knee osteoarthritis has the highest prevalence from all types sites of osteoarthritis, with 33.1% in rural South Africa
Osteoarthritis, which is characterized by loss of joint cartilage that leads to pain and loss of function primarily in the knees and hips, affects 9.6% of men and 18% of women aged >60 years. Increases in life expectancy and ageing populations are expected to make osteoarthritis the fourth leading cause of disability by the year 2020.
UGANDA has only one specialist for rheumatic arthritis infections, Dr. Mark Kaddumukasa, 35. He also teaches and trains at Makerere University Faculty of Medicine.
"We have only one clinic at Mulago. Due to the limited space that is also shared by the other departments, the clinic opens only on Fridays," he says.
Kaddumukasa has been in charge of the clinic since 2006. "Due to the increasing number of arthritis patients, the Uganda Rheumatic Arthritis Association was started to create awareness about the disease," he says.
The association also disseminates information and research about the disease as well as other related infections.
Mulago together with Makerere University have embarked on training postgraduate students in basic knowledge on rheumatology so that they can support the clinic.
What is rheumatic arthritis? It is a unique illness that presents with fever and pain in the muscles and joints, usually resulting in disfiguring or deformities of the limbs.
Kaddumukasa says when it is severe, rheumatic arthritis can deform every joint in the body, muscles, skin and other organs like the heart, liver and kidney.
Kaddumukasa says out of Uganda's population of about 30 million, 300,000 are affected by the disease. He says the condition affects women more than men and normally begins at about 13 years, although it can also affect children.
Kaddumukasa says the disease is hard to diagnose. "It is often confused with sickle cell, especially when it starts during childhood," he explains.
Causes: Rheumatology is caused by diseases which lead to arthritis. Infections include rheumatoid arthritis, osteoarthritis, osteoporosis, HIV, gout and systemic lupus.
He says most of them are immunological diseases which come about when the body fails to recognise itself, leading to the swelling of the joints.
Treatment: Kaddumukasa says there is no cure, but the disease is managed by pain killers and medication to prevent inflammation and strengthen the joints to prevent damage of the bones and cartilage.
"This is important because the longer the disease exists, the greater the joints become damaged," he says.
Patiants are given painkillers and steroids, although these are not enough to manage the disease. Worse still, the drugs are not available at many district hospitals.
"The Government should subsidise the drugs and train more specialists. The cheapest drug costs sh400,000 for a month's dose," Kaddumukasa says.
He says patients are also engaged to participate in physical exercises and sports to reduce pain, and relax the muscles and joints.
Heat or a warm bath can also offer short-term, temporary relief of pain.
"Soak a piece of cloth in warm water and wrap it around the effected joints to relieve pain and stiffness. Do not exceed 20 minutes," he explains.
If not treated, the disease can result in deformed joints or a disfigured body.
“Of all the orthopaedic patients we receive here, 60 to 80 per cent usually have arthritis, a condition which causes pain and inflammation of the body joints,” says Dr Michael Mukasa, an orthopaedic surgeon at Comprehensive Rehabilitation Services in Uganda (CoRSU). The disease mostly affects the hip bone, knee joints, shoulders, spine and other jointed parts of the body. Dr Mukasa says although this disorder affects many people, public knowledge is still low, with many still associating it with witchcraft.
Atai’s story: Maria Aguti Atai, 59 an anaesthetist at CoRSU has lived with arthritis for the last 26 years. “It started in 1988 when I developed a painful left knee. Since I worked in a theatre at Nsambya hospital, I was close to doctors so I told them but they laughed,” Atai recalls.
The next day, the pain had shifted to her right knee. This time, the pain lasted for one week.
Doctors who she worked closely with recommended that she takes anti-inflammatory drugs. This reduced the pain and one month later, she decided to go for another test after doctors suspected a case of arthritis. “I went for a medical test used for diagnosis of rheumatoid arthritis as the pain had spread to all joints. I tested positive for auto immune arthritis,” she says.
Auto immune arthritis is usually associated with genetics. The doctor told me there is no cure, but all I had to do was try to reduce pain by taking anti-inflammatory drugs. Five years after the test, I used to suffer great pain, even while I was on medication,” says Atai.
Treatment: Atai recalls a time in April 2013, when she had to raise Shs16m for her young sister who also suffered from the same condition. Her sister had severe hip arthritis, and the only solution to relieve her pain was through a hip replacement surgery.
Through this surgery, the affected joint is removed and replaced with an artificial one. It took Atai and her family six months to raise the money for the surgery. Three months after the surgery, her sister got healed.
“The pain is no more. She has resumed normal life, and she can ride a bicycle,” says Atai. But even though Atai lives with the disability of arthritis, she prefers to look at the positive side of life. “I have learnt to live with it positively because it seems to be a family problem, yet there is no cure for it. What I do now is to keep myself active so that the disability does not get worse,” she explains.
Regular exercise: Christine Tumusiime, a physiotherapist and head of allied health services at CoRSU says, “Regular exercise is important for an arthritis patient because it helps reduce the chance of joint deformity and keeps the muscles functioning.” Atai uses hand braces, which are assistive devices that help keep her fingers in position at night, and she gets massage for her feet every evening, to keep blood in proper circulation and maintain joint flexibility.
She says she can do almost everything for herself without any assistance, and attributes this to the supportive staff that she works with. She, however, finds difficulty in squatting and kneeling, because this involves bending some of her joints. When this happens, she uses painkillers.
Atai also says she always feels cold, and thinks cold weather stimulates arthritis. But Dr Mukasa says there is no connection between arthritis and cold weather.
Nine-year-old Davis: Another patient, nine-year-old Davis Ainebyoona has lived with arthritis for three years now. His mother, Beneth Turyahebwa, a resident of Isingiro District says her son was normal for the first three years after birth, before he started feeling pain in his right leg.
“Whenever he came back from school, he complained of pain in the shorter leg, especially in the knee and hip joints and could not move the leg. It became stiff,” says Turyahebwa.
She took her son to Mbarara University Hospital, but after two years of severe pain, she was referred to Mulago. However, she could not afford the Shs500,000 that was needed to undertake an X-ray. “We then learnt of CoRSU, where they offered free treatment services for children so we came here in August and my child was operated on August 18,” Turyahebwa says.
Dr Paul Muwa, an orthopaedic surgeon at the hospital explains how the surgery was carried out. “The head of his right femur had been destroyed and this caused the shortening of the leg. I had to remove the head of the femur to reduce the pain and make the joint flexible. Thereafter, we shall make him a compensation shoe to help him walk normally again.”
Causes: Although the exact cause for arthritis is not known, it has been associated with genetic factors. Another possible cause of arthritis, according to Dr Mukasa is trauma, especially through accidents.
Types of arthritis: There are two major types of arthritis, rheumatoid and osteoarthritis. There are however, other types of arthritis depending on the cause, such as septic (infection) and systematic arthritis, which is caused by illnesses such as malaria and HIV.
Arthritis due to age (wear and tear of joints) as a result of drugs and trauma, and gout arthritis caused by crystals that collect in the joints, especially excess carbohydrates and proteins. Rheumatoid arthritis occurs when the body’s immune system does not function properly. In such a situation, the joints feel stiff and achy. “This type of arthritis is more severe than the osteoarthritis, as it occurs when there is a fault in a person’s immune system that makes the body attack its own tissues,” says Dr Mukasa.
The fault is usually genetically inherited from a family member.
Rheumatoid arthritis usually affects older men than women. Osteoarthritis on the other hand, is a degenerative joint disease, where the cartilage gradually wears away. As more damage occurs, the more cartilage is worn away.
This type of arthritis mostly affects the hands, spine, knees and hips. According to Dr Mukasa, this type of arthritis mostly affects people in their 50s, but can also develop at any age as a result of injury or any joint related condition.
The major difference between these two types of arthritis is that osteoarthritis usually affects a few joints, while rheumatoid arthritis affects all joints in the body.
During the surgical process, the surgeon inserts a narrow tube, consisting of a fibre-optic video camera through a small cut, the size of a pin-hole,” explains Dr Mukasa. The process is also used in draining pus and blood from joints, especially in cases where the person has tuberculosis of the joints.
According to Dr Mukasa, if arthritis is not treated, the person gets stiffness in the joints, sleep discomfort due to excessive pain, difficulty in walking and sometimes the limbs become non-functional. In severe cases, total disability in joints may happen.
Prevention and treatment: Proper diet that is rich in calcium and vitamin D, low salt, sugar and fat combined with proper and regular exercise is crucial to maintain healthy muscles and keep joints strong. “Avoid forceful stretching of the joints because ligament structures around the joints can tear, which may later cause pain in the joints,” says Dr Mukasa notes.
Regular health visits for bone density tests, may save an arthritis patient the costs involved in treating the condition when it is in advanced stages.
The general impression is that PD occurs less commonly in Africa than in Europe or North America. Considering that sporadic PD is predominantly a disease of the aging, differences in crude incidence and prevalence are likely explained by differences in the demographic structure of the populations. For instance, the crude prevalence of PD in Africa is lowest in western and eastern African countries where less than 4% of the population are 60 years of age or older, and life expectancy is less than 57 years. This finding is in contrast to the prevalence rates from North Africa that are similar to European populations. The study by Schoenberg and colleagues reported prevalence rates for blacks in Copiah County, Mississippi, that were fivefold higher than in Nigeria (after adjustment for age), and similar to the Caucasian populations in the same county. It remains unclear whether the lower prevalences in Africa compared to Europe and the United States are solely due to different age structures, different methodologies, and lower survival, or whether they reflect truly different incidences...
A key finding from this survey was that 17% of participants believed that PD was contagious while 28% believed that PD is a form of insanity. It might be expected that these attitudes contribute to stigma associated with PD. This is similar to earlier work which reported that half of the respondents saw stigma attached to this disease. These stigmatizing misconceptions make it likely that individuals with PD might conceal their symptoms and delay care seeking, making their situation even more challenging. Designing awareness campaigns for increasing knowledge and changing attitudes within communities would help in increasing social support for PD sufferers in our settings. This study emphasizes the need for adequate education and imparting accurate knowledge to communities. In an earlier study, participants with stigma were more likely to have negative attitudes to people with PD. Stigma leads to discrimination which may be associated with depression and poorer adjustment among those with the stigmatized condition. We did not find any significant differences between rural and urban communities regarding stigma. However, some studies have reported that stigma was higher in rural areas than urban areas.The study concludes:
PD, at least in its more severe form, is readily recognized by the community in Uganda; however, knowledge about what causes PD is limited and stigmatizing misconceptions are unfortunately relatively common. Awareness and education programs on PD have an important role in improving accurate understanding of illness and in reducing stigma. This may ultimately affect care seeking and health outcomes among those with PD. Further studies are needed to understand how knowledge and attitudes may influence care seeking and access for individuals with PD in Sub-Saharan Africa.How does all this theory feed into everyday life? One woman’s pain of living with Parkinson’s disease for 12 years tells the story of Matilda Nakkazi, 53, a mother of 10:
She lives in Ggangu, in Makindye Sub County in Wakiso District.
For the past 12 years, however, she has been battling Parkinson’s disease, a neurological syndrome which characterised by constant shaking of the thumbs and fingers, and constant rigid muscles.
It is a disorder of the central nervous system, and this disease normally affects people who are over the age of 50. Nakkazi says she experiences persistent shaking, rigidity, slowness of movement and difficulty with walking.
Before a diagnosis was carried out at Mulago hospital, Nakkazi thought she had been bewitched since doctors had initially failed to diagnose her condition. “Before I came to Mulago hospital, I was using herbal medicine which did not work. Now I have got some relief,”explains Nakkazi. She is currently undergoing palliative care, which she says has relieved her of pain.
Dr Simon Peter Eyoku from Mulago hospital explains that Parkinson’s disease is a rare disease whose specific cause is not exactly known, although a few cases have been attributed to genetic factors. In Uganda, because it is a rare disease, it is not known how many people suffer from the condition.
Besides genetics, it is said that environmental factors also play a role in the development of Parkinson’s.
Dr Eyoku reveals that although there is no cure for Parkinson’s disease, medications, surgery and palliative care can offer relief from some of the symptoms that are commonly associated with the condition.
Levodopa drug: For some patients, a drug called Levodopa can be used to manage symptoms, and in Uganda, it has so far been the most common drug used. Dr Eyoku adds that surgery is no longer commonly used in managing Parkinson’s disease.
Prevention: Dr Eyoku however explains that Parkinson’s disease can be prevented if the affected persons drink caffeine, commonly found it coffee, tea and cola. Green tea also may reduce the risk of developing Parkinson’s disease.
Dr Eyoku further explains that consuming foods rich in flavonoids, such as berries, apples, orange juice and red wine are also known to reduce the risk of developing Parkinson’s disease by 35 per cent.
Research has also linked the development of Parkinson’s disease reduced oestrogen levels.
This may explain why menopausal women who do not take hormone replacement therapy are more likely to develop Parkinson’s disease.
Nakkazi is currently receiving treatment at Mulago hospital, and says she has kept a strong faith in God, and believes that one day she will be healed of her condition.
For now she engages in regular exercise routines to keep fit and healthy.
Multiple sclerosis is rare among the indigenous black people of Africa. The first account of a black patient with multiple sclerosis in South Africa was published as late as 1987. Since then a search to find black patients with multiple sclerosis in Southern Africa has continued. Seven black patients have now been traced in South Africa and five in Zimbabwe in whom a diagnosis of multiple sclerosis can be accepted. Six of the 12 patients became blind, or nearly so, from severe optic neuritis. Multiple sclerosis in these few black patients more often resembled the disorder as it occurs in oriental people than among white people in southern Africa or the black people of North America or the Caribbean
Ten patients, 4 male and 6 female Ugandan Africans, who have been diagnosed clinically as suffering from multiple sclerosis (MS) are presented. These patients were seen over a ten-year period, five of them over the last year. It is pointed out that the disease may not be as rare as the literature seems to indicate. A higher index of suspicion and more clinical vigilance might reveal more cases. The clinical pattern of MS in Uganda seems to be similar to the disease as seen elswhere.
MS occurs amongst Bantu Africans and may not be as rare as previously suggested and its prevalence is certainly on the increase. The development of higher incidence rates where the illness has been previously unknown may present opportunities for the satisfy of etiological factors as it emerges. There is a need therefore for proper epidemiological studies to evaluate these factors, especially environmental factors, as the new disease continues to appear.
M.S. IN COMMUNITIES OF COLOR: “Who are the People with Multiple Sclerosis?”: “We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little "funny" at the grocery store. - We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, (M.S.) does not discriminate by social standing or class or financial or educational background or language or religion. -We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are every person. We are the People with Multiple Sclerosis. We are People, Just Like You....” - Virginia Sanchez
o Why This is Important:
AMA Apologizes to Black Doctors for Past RacismJuly 11th, 2008 • By LINDSEY TANNER AP Medical Writer
Transplant surgeon Clive Calendar has hurtful memories of being the only black doctor at medical meetings in the 1970s, met with stark silence when he pleaded for better access to transplant organs for blacks. So when the American Medical Association formally apologized Thursday for more than a century of policies [...]
This article from The National MS Society, African American Resources makes the following comments:These are just some of the questions the Martin M.S. Alliance Foundation is working to answer as a main stay of our mission.
- What do we know about M.S. in Africans, Asians, Hispanics, African-Americans - very little
- How many people of color have M.S.?
- How many people of color are diagnosed with M.S. each year?
- How many studies have been done on M.S. in communities of color?
- How many African-Americans, Hispanics, Native Americans, People of Asian, Pacifica Islander, decent etc… have M.S. and does their genetic heritage create a difference in the way the disease manifests itself, in the ways the medication works.
African Americans and multiple sclerosis: The myth that African Americans do not get MS is just that — a myth. African Americans do get MS. In fact, studies suggest that MS can be especially active. African Americans:The report COMPARISONS OF LATINOS, AFRICAN AMERICANS, AND CAUCASIANS WITH MULTIPLE SCLEROSIS shows that the disease varies differently across different racial groups, the average time from first symptoms to diagnosis is around 6 years.
- are more likely to experience more relapses
- are more likely to experience greater disability
- have a greater risk of progressing to require ambulatory assistance earlier
- are more likely to develop involvement of the optic nerves and spinal cord (optic — spinal MS) and inflammation of the spinal cord (transverse myelitis).
Martin Muiruri recalls with pride the day he climbed 20 flights of stairs to see his girlfriend, Robai, at her workplace. That remains the ultimate labour of his love for Robai, now his wife and the mother of their five-year-old daughter.In summary, the suggestion that MS is rare amongst Africans has lead to ignorance about MS in Africa and Uganda. Contradictory studies of the numbers of people have fueled the debate. Despite this ignorance there are figures emerging that hint at the numbers of people in Uganda that may have MS. Combine to this the fact that it takes a long time to diagnose MS, on average 6 years in the USA, and it is difficult to assess the true impact of MS on people in Uganda. Finally, the relapsing and remitting nature of MS makes it ripe for miracle cures. Add to this the stigma and prejudice of MS and an already vulnerable group is multiply disadvantaged.
So what? Men have done much more spectacular things for love, you might say, but for Martin, who suffers from progressive multiple sclerosis, the chances hurting himself on his way to see the love of his life were extremely high.
Multiple sclerosis, or simply MS, is a rare autoimmune disease that causes the body’s own defences to destroy neurons in the brain and spinal cord.
MS is debilitating because it affects the nerves. When you suffer from MS, the body destroys myelin, the fatty insulating material that covers the nerve fibres that form part of the nervous system, which controls all bodily functions.
Demyelinated nerves cannot transmit impulses to the brain or spinal cord and from either to the muscles in the body. Consequently MS patients sometimes have difficulty with simple things like swallowing food, blinking, controlling their bladder or limbs, or focusing their eyes on an object.
The disease begins with what is known in neurology as the relapsing-remitting phase, during which patients oscillate between periods of stability and getting worse. As the disease progresses, they gradually lose control of all their muscles and have to depend on others.
When the disease reaches the progressive stage, as in Muiruri’s case, there is no cure.
SAME BOAT: So it is surprising that, although Muiruri and Robai know that the future is bleak, they burst into hearty laughter along with their friends as they make fun of the embarrassing situations that MS has put them through.
“One day the driver of a public service vehicle refused to stop for him to urinate” Robai recalls.
“The man didn’t understand that I had guests from abroad in the vehicle and that that was not the time for me to embarrass myself in front of them and my daughter,” Martin continues.
The others in the meeting in a house in Buruburu, who are members of the Multiple Sclerosis Association of Kenya (MSAK), laugh because they are in the same boat.
For instance, Dennis “the menace” Gitonga is in the relapsing-remitting phase, which makes his limbs weak, causes him fatigue and and leads to spasticity.
His jocular reference to “spasticity” belies the experience: when undergoing spasicity, his muscles tighten or he experiences spasms during which he cannot control the movement of his legs.
It is such issues that stopped him from playing rugby and drastically affected his working life.
Martin first realised that something was wrong when he had trouble lifting his leg as he tried to climb a stair.
When he sought medical attention in 2010, the doctor ordered a magnetic resonance imaging (MRI) test, which revealed patches on his brain that suggested demyelination, a common symptom of MS.
Ironically, notes Martin, he had always been a hardworking person who ate right, exercised, and followed all the rules of healthy living.
The MSAK provides a useful forum where they exchange notes on their experiences, but today a few of them are meeting to share experiences.
Their discussions are punctuated with appreciation of the little things that they once took for granted.
Kamau Kimani, the association’s chairman, has lived with MS since 2006.
“Nowadays I have to think hard while planning my daily movements because I have to know where the lifts and the toilets are situated in the building I am going to,” he says.
Kimani would love to play football with his two teenage daughters and carry them when they run into his arms like he used to but he can’t.
“We used to go swimming but I stopped because I feared that we might drown … sometimes I know that they want to play, but what do I do?” he wonders.
Like Dennis and Martin, Kamau also uses a walking stick.
When he falls down, he says, he stays down for a while as he figures out how to get up because it can be quite a process.
Lucia Ndolo, who has lived with the condition since 1975, also had trouble getting up after a fall, until her physiotherapist came up with a sequence that works for her.
MULTIPLE CHALLENGES: “He taught me to roll onto my side, lie on my tummy, then get on my knees before getting onto my feet,” she explains.
Lucia, a master’s degree holder working in the Ministry of Agriculture, has to use a wheelchair, which she finds greatly distressing. She has always been a fiercely independent woman, so depending on others has been most humbling.
“There are days that I am so low that I have to rely on someone’s kindness for everything, from being dressed to… it breaks my heart,” she trails off.
Martin avoids taking fluids when he is travelling because when he gets the urge to relieve himself, he cannot not hold it back for more than a minute.
“It is difficult to relieve yourself wherever you feel the urge since every human being wants to maintain their dignity,” he says.
As if the helplessness that robs MS patients of their dignity is not enough, they have to deal with public ignorance. For instance, thanks to the way Lucia walks, people sometimes think she’s drunk.
“One day a man on the street asked me whether he could get me another bottle of beer,” she says.
Just like the name of the disease, there are multiple challenges that come with managing and living with MS. Besides, it is a frustrating disease for doctors too because it progresses unpredictably in different patients, making it difficult to assess the effectiveness of a particular line treatment.
Although official figures for the number of sufferers are not available locally, neurologist Dr Juzar Hooker estimates them to be in the hundreds of thousands, adding that his heart goes out to them.
“There are cases misdiagnosis, in which patients are treated for other diseases such that, by the time MS is diagnosed, it is at an advanced stage,” he says. In addition, some patients are considered bewitched or taken to herbalists. Then there patients who know they have MS but cannot afford treatment.
Dr Hooker says the cost of basic drugs for managing the condition is prohibitive.
For instance, a monthly dose of interferons — drugs that modulate the response of the immune system to viruses, bacteria, cancer and any other foreign substances that invade the body — costs up to Sh100,000.
Meanwhile, drugs that prevent flare-ups cost anything from Sh 245,000 to Sh350,000 a month. Sometimes he has to import drugs, whose costs are borne by the patient.
And for patients who slur, there is the additional cost of speech therapy drugs and regular MRIs, which cost between Sh45,000 and Sh70,000.
There are also treatments for memory loss since patients in the advanced stage of MS experience brain atrophy, which means their brains shrink.
HEALER OF MANY DISEASES: A study published in The Lancet last year suggested that statins — drugs that reduce cholesterol in the body — reduce annual brain atrophy by 0.3 per cent from the normal 0.6 per cent loss in MS patients.
In a month, a patient can spend between Sh 400,000 and S 1 million, yet many insurance companies do not have cover for the disease.
Other expenses include travelling by taxi so that they can ask the driver to stop if they need to, say, go to the toilet.
MS patients are also acutely aware of the quackery that comes in the form of herbalists, magic beverages and prayer.
Lucia tells of a friend who introduced her to a man who had healed “many diseases”.
“When the man said he injects any part of the body and the patient gets well, I said no thank you,” she says.
Then there are other treatments such as bee-sting therapy and aloe infusions, whose efficacy has been questioned.
In 2009, an Italian scientist, Paolo Zamboni, hypothesized that the real cause of MS was something called chronic cerebrospinal venous insufficiency, or CCSVI. MS patients received CCSVI as exciting news of a medical breakthrough.
Zamboni’s study purported to find CCSVI in 100 per cent of MS patients, and he suggested a surgical procedure called angioplasty to treat it: it entailed opening the veins that carry blood away from the head with the aim of restoring normal blood flow.
He posited that compromised blood flow in the veins draining the central nervous system leads to iron deposits around the pulmonary veins, which triggers autoimmunity and the degeneration of myelin.
Dr Hooker understands that the desire to live would drive patients to seek treatment from anywhere, even against his advice.
Even though some of his patients do not like what he tells them, he consistently reminds them that no one knows what causes MS, how it will progress in each patient, and that there is no cure at the moment, so it can only be managed.
He also understands that patients without a scientific background often view any news of a breakthrough as important, when in some cases, there is nothing new.
“I advise them to stick to well-known treatment, even when there is a scientific basis it may be a very weak one”, he says.
Dr Hooker wishes the government would give as much attention to autoimmune illnesses as it has HIV and maternal health.
“Perhaps just bear a little part of the cost of drugs for patients, or fund more research,” he says.
