Tackling inherited illness

Often, parents and children with inherited sickness have a hard time handling crises when they occur. FUNKE OSAE-BROWN writes that staying strong together helps families to overcome.

More than 40 years ago, Toyin Adesola was born ith Sickle Cell Anaemia Disorder (SCD) a blood disorder that was inherited from both parents. At first, her childhood was like any other child except for the frequent, terrible pains she felt in her bones which led to crises attacks, and blood transfusions.

However, her situation took a turn for the worse, when in 1973 after a prologue stay in the hospital due to an infection of the bone called septicaemia, left her with a dislocated hip. She then had to use crutches, after spending six months bedridden. “It was months of immobility which affected me emotionally especially as I had to quit my schooling just as I was entering Form two,” she recalls.

Toyin is one of many people who suffer from one form of genetically inherited problems or the other. These are sicknesses often passed down either through maternal or paternal side of the family genealogy.

Sickle Cell Anaemia is a hereditary blood disorder. A disorder passed on from both parents, usually when both parents are of the genotype AS explains Tolani Adeoye, a medical practitioner. “Although it is predominantly associated among blacks, there has been found to be various derivatives among the people of Mediterranean, Arab and some Asian descent. It is important to note that your genotype is different from your blood group, as blood groups have nothing to do with the genetics of having a child with Sickle Cell.”

“A sickle cell crisis occurs when sickle red blood cells form clumps in the bloodstream, due to the banana like shape of the blood cell. Normal cells are usually round and squishy. These clumps of cells block blood flow through the small blood vessels in the limbs and organs. This can cause pain and organ damage. The pain can be acute or chronic and could last from a few days to months. Other issues associated with sickle cell range from strokes, vision loss, kidney disorder,reduction in immunity, vaso-occlusive crisis, osteomilytis (infection of bone or bone marrow) and more.”

Another example of a family related disease of a physical nature says Tola Adeneye, a physician is that of breast cancer. “Generally speaking when a mother experiences breast cancer her daughters should receive regular mammograms in response to their mothers condition. It is a recognised fact in the health community that cancer is indeed inherited through a genetic link.”
According to her, sometimes cancer may skip a generation or even two. “A cancer that a grandparent or great-grandparent suffered might not be expressed again until the arrival of grandchildren or great-grandchildren. Unfortunately, one disadvantage in this case is that early signs of cancer might go unnoticed since cancer in ones ancestors may eventually be forgotten and simply become a part of family history.

Another family related health problem is obesity. It is an undeniable fact that the majority of obese people hail from an obese family genealogy. A conflicting viewpoint is that lifestyle, rather than genetics plays a role in this condition, yet most researchers are undecided on this issue. “To be sure lifestyle characteristics are learned from an early age and the sedentary family with poor eating habits is doing a disservice to their children. However, those families who lead a reasonable lifestyle yet continue to suffer weight problems may well express an inherited genetic tendency toward obesity,” explains Ugochukwu Ebele, a nutritionist.

Family related mental health problems are also genetically linked observe Taiwo Ogunmodede, a psychiatrist. “Mood disorders such as Bipolar Disorder and psychoses such as Schizophrenia are typical examples of inherited mental illness. These illnesses too can often skip a generation or two within a family genealogy and therefore go unrecognised and untreated for several years.”

Drug and alcohol addictions are yet another family related health problem. The argument again with this issue is whether or not there is an inherited propensity towards addiction or if such a condition is the result of the familial environment. “Perhaps there is room for confusion about drug and alcohol addiction as a possible genetic problem since many families may have only one member who suffers from drug dependency. The argument surrounding this phenomenon then is whether or not it is possible that only one family member can inherit a drug or alcohol dependency while others do not,” observes Ogunmodede.

Finally there is another category entirely of family related health problems. Is it possible to create such an unhappy and dysfunctional environment that family members may become physically and emotionally ill? It would seem that this is very possibly the case, particularly in families experiencing neglect and harsh abuse. In this instance the concept of family related health problems is very literal, as these unfortunate issues are brought about solely by the familial environment and not by an inherited condition.

Seun Adigun, a parent says it could be a huge strain caring for a sick relative. According to her, she took care of an aunt who suffered from cancer for four years before she finally died. “It was really difficult at a point I saw her as burden. But I could not discard her allow her to rot on the hospital bed. I could not say that her death was a huge relieve.”

Handling family health problems could be really tough as the case of Toyin Adesola shows, there were days even months when affected individual are at the point of taking their lives out of frustration.

“These ulcers, my inability to move around, the continuous crises attacks, my disrupted education and a static house bound life, turned into days of depression, loneliness, frustration, and bitterness, to the point of almost being suicidal,” explains Adesola.

Psychologists advice that people suffering from inherited sicknesses should take constant advice from counsellors and psychologists who will be in a better position to counsel them on how to live and belief in themselves.

After years of living in frustration and dejection, Adesola began to look inwards and discovered something within. “I began writing a journal to vent my frustration as I had no one to confide in. In a way these journals were a plea to God. One day I took a decision to make something of my life. I then had a crash course for my WAEC and JAMB exams (all within two years) and entered Lagos State University, where I gave my life to Christ. As my faith grew, my life began to change; I strenuously completed my University education and bagged a degree in Economics. Some years later, at a church crusade I dropped my crutches and never looked back.”

“For someone who feared what the future held and who people thought won’t be alive to see today, I am now an ordained deaconess, have written a book chronicling my experience called Still Standing, -which had me on Radio, TV and Newspapers interviews, and now run an NGO, Sickle Cell Advocacy & Management Initiative (SAMI). With a motto Life is possible. Our mission is to eliminate the effects of Sickle Cell Anaemia Disorder through education, awareness and empowerment.

Despite my over 200 hospital admissions, over 15 blood transfusions and 5 operations, I have overcome and I can say I’m Still Standing.”