Shattered Dreams
Afflicted by a very rare disease, brilliant camera repairer, Samuel Emenike, is undergoing a metastasis that is shrinking his body and possibly ending his once-ebullient dreams, Solomon Elusoji writes on his story
In 2013, he started to have problems with his respiration and his joints had started to malfunction, so bad that he could not fold his hands anymore or summon a clap. By the time doctors would place a finger on his condition and declare that he was a progressive systematic sclerosis patient, too much time had been wasted
Samuel Emenike was one of the best camera repairers in the country, when he was in action. From his workplace at Lagos Island, he conjured magic with his nimble fingers, fixing the cameras of popular photographers like Bayo Omoboriowo, the official photographer of President Muhammadu Buhari and former Ekiti State Governor, Segun Oni, who has the Lagos State Government on his client list. But, like all brilliant craftsmen, Emenike was not content with just fixing things.
“My dream was to train young people on how to fix cameras,” the 35-year-old Emenike told THISDAY. “We are few in Nigeria that repairs cameras, and since there was so much unemployment in the country, I wanted to help take some young people off the streets,” he explained.
Although he had grand plans on how to make this dream work, life soon served him lemons.
The symptoms started sometime in November 2011, when he began to feel feverish every morning and evening, and started to emaciate. Like the average Nigerian, he thought this was a case of malaria or typhoid. He was wrong.
When he went for tests at hospitals, they couldn’t diagnose what was wrong with him, although his physical reality was definite proof that he was suffering mortally. In 2013, he started to have problems with his respiration and his joints had started to malfunction, so bad that he could not fold his hands anymore or summon a clap. By the time doctors would place a finger on his condition and declare that he was a progressive systematic sclerosis patient, too much time had been wasted.
“There was a time they thought it was poison,” Emenike told THISDAY. That was when the colour of his skin had started to change into shades of blue and green.
To be certain, progressive systematic sclerosis, also known as scleroderma, is a very rare disease among Nigerians. According to healthline.com, scleroderma is an autoimmune disorder. This means that it is a condition in which the body’s immune system attacks its own body; healthy tissue is destroyed, because the immune system mistakenly thinks it is a foreign substance or infection.
The article at healthline.com explains further: “Scleroderma is characterised by changes in the texture and appearance of the skin due to an increase production of collagen, a component of connective tissue. However, the disorder is not confined to skin changes. It can affect blood vessels, muscles, and a number of vital organs such as the heart, digestive system, lungs, and kidneys. Features of systemic sclerosis can be seen in other autoimmune disorders and when this occurs, it is called a mixed connective disorder.
“The disease is typically seen in individuals within the 30 to 50 years old range, but can be diagnosed at any age. Women are four times more likely than men to be diagnosed with this condition. The symptoms and severity of the condition can vary among individuals and are dependent on the systems or organs involved.”
While the exact cause of the disease remain unknown, the factors that have been associated to its development include: being Native American or African American, being female (females are four times likelier to develop it), use of certain chemotherapy drugs such as Bleomycin, and being exposed to silica dust and organic solvents.
Sadly, there is no one-in-all cure for the disease; treatment is typically determined based on a person’s symptoms and the need to reduce the risk of complications.
Currently, Emenike is attending a hospital in Lagos that specialises in arthritis and rheumatoid, because of his malfunctioning joints. He has lost control of his muscles and cannot move around like he used to. Now, he is stuck in one place. When he is pressed, he does his business inside his room. For baths, he simply cleans up with a towel dipped in water. To add more weight to his burdens, his wife, who has been supporting him since the infection started, was recently involved in an accident and lost her legs.
“My survival is now based on friends and neighbours,” he told THISDAY.
Although his physical challenges have deterred him from chasing his dreams, Emenike maintains a positive outlook of life. He chuckles in between conversations and still believes that he can make a positive impact in spite of his condition.
“I am just looking for a way to manage this deformity,” he said. He is looking at travelling abroad for a better chance of managing the disease. The medical attention he is receiving in the country, apart from being very expensive, is of low quality, since the local healthcare industry is not well equipped to tackle rare cases like scleroderma.
“We are not familiar with it over here,” a medical doctor, Bunmi Jeje, told THISDAY. “So, the wise option is to seek medical treatment abroad, if one can afford it. Over there, they are more familiar with situations like this and are in a better place to help manage the situation.”
The estimate for foreign travel and treatment Emenike was given amounted to $30,000, and he said he has been soliciting for funds to help save his life and career. He has been able to raise some money privately, but his expensive medical treatments have been draining his resources.
Meanwhile, scientific research continues to make progress on finding better ways to deal with scleroderma. Recently, as reported by Streetinsider.com, Cytori Therapeutics, Inc., a regenerative-medicine company based in San Diego, reported new data demonstrating a single administration of Cytori Cell Therapy (ECCS-50) achieved a sustained improvement in hand dysfunction at two years in patients with scleroderma.
The trial findings were presented by trial co-principal investigator Dr. Guy Magalon on February 20, 2016 at the 4th Systemic Sclerosis World Congress in Lisbon, Portugal. In general, the data showed a sustained two year improvement in hand symptoms and function across multiple endpoints in patients with scleroderma following single administration of Cytori Cell Therapy™ (ECCS-50).
“Hand dysfunction in scleroderma is both disabling and hard to treat,” said Dr. Guy Magalon, who presented these data on behalf of the team at Assistance Publique-Hôpitaux de Marseille (APHM). “The standard treatments we rely on for these patients are often not effective or are poorly tolerated because of side effects. The broad efficacy signals along with a very favorable safety profile makes ECCS-50 one of the more promising new therapeutic options for these difficult to treat patients.”
SCLERADEC-I, led by Principal Investigators Pr. Brigitte Granel and Pr. Guy Magalon and the Cell Therapy Department of APHM by the team of Pr. Florence Sabatier, is a 12 patient, French, single center study aimed at measuring for the first time the safety, tolerability and potential efficacy of Cytori’s ECCS-50 locally injected in patients with hand disability due to scleroderma. Scleroderma has orphan designation in Europe.
“The scientific findings of sustained symptomatic and functional improvement coupled with the direct patient feedback we have received from other scleroderma patients treated apart from this trial leads us to be optimistic about the potential for ECCS-50 to help patients worldwide,” said Dr. Marc Hedrick, President and CEO of Cytori Therapeutics Inc. “The follow on approval trials, STAR and SCLERADEC II are enrolling, our EU compassionate use (or Managed Access) program has launched and we remain on track to submit to US FDA in mid-2017.”