adminto the extremes to make sure the new bundle of joy gets all the life necessities.
No parent wants to see a child sick, even from flu. Everyone wishes for a healthy baby.
But some parents have not been so fortunate.
A number of parents have had the heartache of watching a child struggle to breathe for various reasons, including asthma and bronchitis.
Many spend sleepless nights taking care of the child and hope for the best with each visit to the paediatrician.
But for a Harare family each visit to the paediatrician was met with sad news difficult to stomach.
What made the news unbearable was when they learnt that their child was suffering from a rare type of disease that is incurable. It was just heartbreaking.
The nightmare of the Mutimha family of Harare’s high-density suburb of Mbare began after their eight- year-old daughter Rachael was diagnosed with an auto-immune disease called systemic lupus erythematosis,
an ailment they had never heard of.
For the past two years, Rachael has been admitted at Harare Central Hospital battling for her life. Each day has become a blessing to the family.
“At first, we thought Rachael had asthma. We tried everything but it did not go away. We then got the news that she has this rare disease we have never heard of.
“Our daughter has been a patient at Harare Central Hospital for the past two years and there is no sign of recovery.
“She is supposed to be in Grade Three but has stopped going to school because of her ill health,” said Rachael’s father, Mr Boas Mutimha.
In an interview at their house in Mbare, the couple expressed devastation at their child’s state.
Mr Mutimha is unemployed and has four other children to take care of.
“We are appealing to well wishers for their support in this difficult time.
“Rachael needs to go for treatment in South Africa because the disease is not treated in Zimbabwe.
“We hold our breath hoping for the best. We pray and we wish, but there is no change,” said Mr Mutimha.
The heartbroken father said Rachael is being helped to breathe by a certain type of pills called prednisone.
But what is this disease and what causes it?
Journal e-medicine health says systemic lupus erythematosus (SLE), or lupus, is an autoimmune disease in which a person’s immune system attacks various organs or cells of the body, causing damage and dysfunction.
Lupus is called a multisystem disease because it can affect many different tissues and organs in the body.
Some patients with lupus have very mild disease, which can be treated with simple medications, whereas others can have serious, life-threatening complications.
Lupus is more common in women than men, and for reasons that are not precisely understood, its peak incidence is after puberty.
While lupus is a chronic illness, it is characterised by periods when the disease activity is minimal or absent (remission) and when it is active (relapse or flare).
The outlook (prognosis) for patients with lupus today is much better than years ago because of greater awareness and more accurate tests leading to earlier diagnosis and treatment as well as more effective and safer medications and monitoring methods.
Wikipedia adds that Systemic lupus erythematosus is a long-term autoimmune disorder that may affect the skin, joints, kidneys, brain, and other organs.
There is no cure for the disease and the underlying goal is to symptoms, which require aggressive treatment by specialist doctors.
As with other autoimmune diseases, people with lupus share some type of common genetic link. An identical twin of a person with lupus has a threefold to tenfold greater risk of getting lupus than a nonidentical twin.
Moreover, first-degree relatives (mother, father, brother, sister) of people with lupus have an eightfold to ninefold increased risk of having lupus compared with the general public.
The journal adds that in the past, the drugs most frequently responsible for drug-induced lupus are procainamide (Procanbid), hydralazine (Apresoline), minocycline (Minocin), phenytoin (Dilantin), and isoniazid (Laniazid). However, newer medications have been associated with drug-induced lupus, such as the new biological agents (etanercept [Enbrel], infliximab (Remicade), and adalimumab (Humira]) used to treat rheumatoid arthritis. Generally, lupus that is caused by a drug exposure goes away once the drug is stopped.
Many women with lupus note that symptoms may be worse after ovulation and better at the beginning of the menstrual period. Estrogen has been implicated in making the condition worse, and this problem is currently being studied.
Home care for lupus generally involves taking the prescribed medications and adhering to good practices such as using sunscreen because there is often a history of skin sensitivity to sunlight.
- People with sun-induced rashes should always wear a high SPF lotion that blocks both UVA and UVB types of ultraviolet light.
- Those taking oral steroid therapy or immune-suppressing agents should be vigilant if a fever develops, since fever can occur with lupus flares or with a superimposed problem, especially infection.
- A combination of rest, especially during flares, and exercise for joints and muscles is important and should be supervised by the treating physician and physical therapists.
To make matters worse, Rachael had no passport back then to go to South Africa.
Her paediatrician Doctor Estillah Kuture wrote to the Registrar General’s office by asking for assistance and they have since been assisted with a passport.
The letter addressed to the Registrar at Passport offices in Harare stressed the urgent need for Rachael to travel to the neighbouring country for treatment as her condition is serious.
According to the peadiatrician at Harare Central Hospital, the doctors tried steroid treatment as first line management but Rachael developed complications.
They recommended the girl to seek further management in South Africa.
Rachael has symptoms that include sensitivity to sunlight, skin rash and a butterfly rash over the cheeks, and hair loss hence the need to undergo screening for thinning of the bones.
If well managed, most patients can lead full and healthy lives and Rachael would be able to complete school, get a job and start her own family.
Those who are touched by Rachael’s story can extend their support to Mr Boas Mutimha of number 51 Madzima Street in Mbare on 0772 991 687.
Well wishers can change Rachael’s life by depositing any amount in the Standard Chartered Bank, Robert Mugabe Harare Branch account number 87-002-284103-00
Online Reporter