Seva Canada: A Solution in Sight

For a what is supposed to be a rare eye condition, I’ve heard way too much about retinoblastoma cases lately.

Just the other day an ophthalmologist friend in Vancouver mentioned seeing a case and today we got a story of a little boy in Nepal who suffered from retinoblastoma.

Retinoblastoma is a rapidly developing cancer which develops in the cells of the retina, the light detecting tissue of the eye. Retinoblastoma is rare and affects approximately 1 in 20,000 live births. Untreated retinoblastoma is almost always fatal; therefore, early diagnosis and treatment is critical to saving lives. In the developed world, retinoblastoma has one of the best cure rates of all childhood cancers (95-98%), with more than nine out of every ten sufferers surviving into adulthood.

There are two forms of the disease; a genetic, heritable form and a non-genetic, non-heritable form. Approximately 55% of children with Rb have the non-genetic form. If there is no history of the disease within the family, the disease is labelled “sporadic”, but this does not necessarily indicate that it is the non-genetic form.

In about two thirds of cases, only one eye is affected (unilateral retinoblastoma); in the other third, tumours develop in both eyes (bilateral retinoblastoma). The number and size of tumours on each eye may vary. In certain cases, the pineal gland is also affected (trilateral retinoblastoma). The position, size and quantity of tumours are considered when choosing the type of treatment for the disease.

Himal, age 5, from was brought to Seva’s partner hospital, the Lumbini Eye Institute by his grandmother on February 1st with a history of no vision in his left eye.

The family hadn’t noticed that the boy was blind in one eye until a week earlier when they were watching TV and the little boy’s right eye was itchy so he covered it temporarily.

Himal, age 5, is examined and diagnosed with retinoblastoma in his left eye. Photo courtesy of Seva Canada

The family immediately took Himal to the local health post in a nearby village and the staff there referred him to the Lumbini Eye Institute. After a detailed examination, Himal was diagnosed with retinoblastoma in his left eye.  The pediatric ophthalmologist was unable to restore the sight in the boy’s damaged eye, but was able to save the child’s life by removing the left eye.

It is vital that children receive eye exams. The most common and obvious sign of retinoblastoma is an abnormal appearance of the pupil. Many parents refer to this reflection as “cat’s eye” or “white eye”.  Medically, it is known as leukocoria. Other less common and less specific signs and symptoms are: deterioration of vision, a red and irritated eye, faltering growth or delayed development. Some children with retinoblastoma can develop a squint, commonly referred to as “cross-eyed” or “wall-eyed” (strabismus). However, retinoblastoma presence with advanced disease in developing countries and eye enlargement is a common finding.

Screening for retinoblastoma should be part of a “well baby” screening for newborns during the first three months of life, to include:

• The Red reflex: checking for a normal reddish-orange reflection from the eye’s retina with an ophthalmoscope or retinoscope from approximately 30 cm / 1 foot, usually done in a dimly lit or dark room.
• The Corneal light reflex: checking for symmetrical reflection of beam of light in the same spot on each eye when a light is shined into each cornea, to help determine whether the eyes are crossed.
• Eye examination: checking for any structural abnormalities.

Treatment of retinoblastoma varies from country to country. The first priority is to preserve the life of the child, then to preserve the vision and thirdly to minimize any complications or side effects of the treatment. The exact course of treatment depends on the individual case and will be decided by the ophthalmologist in discussion with the pediatric oncologist.

The process of removing an eye while leaving muscle tissue intact is known as enucleation.  For many cases of retinoblastoma, and particularly unilateral cases, enucleation is considered the primary treatment.  Removal of the eye in unilateral, non-heritable cases is curative.  While the child will suffer some peripheral vision loss as a result of the removal of an eye, the risks associated with attempted treatment, including spread of the tumor beyond the eye, are generally viewed as too great.  Removal of the eye also spares the child invasive chemotherapy and its inherent risks.  Bilateral cases of retinoblastoma, because of the threat of complete vision loss, are often treated more aggressively.  An eye is generally removed only if there is a significant threat of the tumor spreading beyond the eye.

Eye care for children, including school screening, are essential parts of all of Seva’s sight programs. You can support Seva’s work providing eye care for children by making a donation. Himal has lost an eye, but his life has been spared.

On Tuesday February 2, the students of Mme Grunfeld and Mme Lee at Tomekichi Homma Elementary School in Richmond, BC presented Seva Canada with a giant cheque for $2,146.70.

Two of the students at Tomekichi Homma School presenting a cheque to Susan Erdmann

This very generous amount was raised by the students and will be used to restore sight by funding cataract surgeries in remote areas of the developing world. There are 45 million blind people in the world and most of this blindness is caused by cataract, the clouding of the eye’s natural lens, and can be treated with a short operation costing $50 or less.

The cheque was presented to Seva board member, Susan Erdmann, and Seva office manager, Annie Chen, at a special ceremony at the school.

Students of Mme Grunfeld and Mme Lee with cheque for Seva Canada

Susan, who has traveled at her own expense and seen Seva’s work first hand. Susan told the children about the three eye camps in Tibet that she witnessed, at which hundreds of blind people were led in by their family members or caregivers and who, after a short operation lasting 15 minutes or less, they had their sight restored.

Seva Canada is very grateful to the students of Mme Grunfeld and Mme Lee for their hard work and compassion in helping to restore sight to the world’s blind. The money raised will be used to help fund a Seva eye camp in Tibet, an area with the highest rate of blindness in the world.

The story of Tsultrim Dorje
by Dolma Chugi, Seva Tibet Staff

“I asked the doctors to take my eyes out and exchange them with Tsultrim’s many times, but they kept telling me that such a medical technology wasn’t invented,” confessed Tsultrim’s grandmother. She would gladly have given her precious sight to her grandson and spared his parents, his aunt and herself the many tears they have cried in the past three years. She is pictured here on the far right with Tsultrim and his aunt. Worrying about his eye health has aged her beyond her 68 years.

Tsultrim Dorje with aunt and grandmother

Tsultrim lives mostly with his grandmother and his aunt because his parents work long hours. They only have time to be with him occasionally on weekends and during their holidays. His mother works as a bathroom cleaner at a hotel and his father is a porter. Together they earn only US $192 a month and that has to feed and support Tsultrim, his grandmother, his aunt and themselves.

For three years, Tsultrim’s father lived with the nightmare that Tsultrim’s blindness wouldn’t be treated and that he wouldn’t be able to go to school like all the other children. He shared his fears with me and, after rolling his eyes for a few seconds, he said “You know, nowadays, no schooling means no academic degree, and no degree means no life!” His voice trembling, he continued, “Tsultrim is my only child. The devastation of his life is the tragedy of my life!”

Tsultrim Dorje after his cataract sugery wearing his aphakic glasses

Tsultrim had his first surgery on one eye when he was only four months old. Ever since, he has been terrified of hospitals and doctors. His most recent surgeries were performed by Dr. Judy Newman, a pediatric ophthalmologist and volunteer from the USA. Dr. Newman has been a pioneer of pediatric eye programs for Seva in Tibet. She remembers Tsultrim very well because he cried the loudest and hardest throughout every visit, from registration all the way through examination, vision-checking, eye drops and surgery. He even cried during follow-up visits.

Cataract management for children is more complicated than for adults and, as a result,
Tsultrim has already undergone three surgeries. Intraocular lens implants are not recommended until the age of nine when ophthalmic nerves are better developed.  Now, at last, after all the crying and struggles, his sight has been restored and he can wear aphakic glasses – glasses that work to replace the eye’s natural lens. He can behave like a normal child!

One sunny Sunday morning three months after Tsultrim’s surgery, I was strolling in the Naga Park behind the Potala Palace and unexpectedly met Tsultrim and his aunt. Tsultrim was running energetically around the pathways. His aunt was thrilled to tell me that Tsultrim had been admitted to kindergarten in the fall. Tsultrim never stopped running around during our whole conversation.

Tsultrim Dorje wearing his special aphakic glasses at school in Tibet

On Tuesday, I visited Tsultrim in his kindergarten. It was almost lunch time. All the kids had just packed up their text books and cleared their desks to get ready for lunch. They would eat together and then nap together in a dorm. Tsultrim, however, was waiting for his aunt to pick him up and take him home for his lunch and nap. I felt sorry he couldn’t stay with his classmates but his aunt explained that tuition at kindergarten costs US $176 each year and is double if Tsultrim stays at school for his lunch and nap. This extra cost would be a huge burden to the family because of their meager income. Nevertheless, being able to go to school and get an education – just like all the other children – counts more than anything else to Tsultrim and his family!

The team at Seva Nepal are brilliant! Kandel, Parami and Shravan work tirelessly to bring eye care to the very poor, those in remote areas, women and children. They are models of compassion in action.

Here’s a series of photos that Parami sent us from an eye camp that took place in Terathum, Nepal this autumn. It illustrates the tremendous burden (literally) that cataract blindness places on families and communities.

This woman is blind from mature bilateral cataracts and was carried to the Seva eye camp at Terathum by her teenaged grandson in this traditional Nepali basket.

Here she waits, sitting in the basket, with hundreds of other eye care patients

The burden of cataract blindness... a teenage boy carries his blind grandmother to have her eyes examined by the ophthalmologist.

The blind woman has her eyes examined by Dr. Iris Winter from Biratnagar Eye Hospital. During the first day of the camp, Dr. Winter examined 220 patients.

Receiving cataract surgery at the Seva-supported Terathum Eye Camp in Nepal

Her sight restored through a 15-minute cataract surgery costing about $50 (less than a haircut in North America), this Nepali woman can now walk on her own back to her village. Restoring someone's sight is the most cost-effective way to reduce poverty according to the WHO.

This woman was one of 5 patients who were carried on the backs of their relatives to the Seva-supported eye camp. Some patients walked two full days to seek care.

Here are the happy results of this camp: A total of 564 patients were examined in the three-day eye camp and 67 surgeries were performed, of which 54 were sight-restoring cataract surgeries (31 female & 23 male) and 13 (female 7 & 6 male) were other surgeries like pterigium, chalazion & entropion surgeries*. A total of eight bilateral blind patients underwent surgery.

Our deepest thanks to the team and to our wonderful Seva donors who made this possible. And thank you to Parami, Shravan and Kandel at Seva Nepal for sharing this heartwarming story with us.

To give the gift of sight, visit www.seva.ca.

Definitions:

What is pterigium?:  A pterygium is fleshy tissue that grows in a triangular shape over the cornea (the transparent part or front window of the eyeball). It may grow large enough to interfere with vision.

What is chalazion?: A chalazion  is a cyst in the eyelid that is caused by inflammation of a blocked meibomian gland, usually on the upper eyelid. Chalazions differ from styes in that they are more painful than styes, as well as bigger in size. A chalazion could take months to fully heal with treatment and could take years to heal without any.

What is entropion?: Entropion is a medical condition in which the eyelids fold inward. It is very uncomfortable, as the eyelashes rub against the cornea constantly. Entropion is usually caused by genetic factors and may be congenital. Trachoma infection may cause scarring of the inner eyelid, which may cause entropion. Treatment is a simple surgery in which excess skin of the outer lids is removed. Prognosis is excellent if surgery is performed before the cornea is damaged.

Everyone at Seva Canada was very saddened to learn today of the passing of Hilary Rhodes.

Beloved mother, friend and sister, Hilary Rhodes passed away peacefully at dawn September 24th, surrounded by her loving children. Hilary is survived by her three children Hamish, Katherine and Christopher and her brother Brock Smith. A memorial service celebrating Hilary’s life will be held at St. Philip’s Anglican Church, 3737 West 27th Avenue, Vancouver at  2 pm Wednesday, September 30 2009.

In honor of Hilary, donations can be made to the BC Cancer Society, Vancouver.

Hilary had worked as Seva’s administator from 2000 to 2006.

She will be greatly missed and the board and staff of Seva express their condolences to Hilary’s family and friends.

Beginning March 11, the second Wednesday of every month will be a Seva benefit evening at the Chai Gallery, a Silk Route-inspired serving sumptuous Eastern banquets.

Located at 3239 West Broadway, between Trutch and Blenheim, Chai Gallery is Vancouver’s hottest world fusion venue, where food, music, dance and people of the world come together and celebrate.

This weekly fundraiser features some of Vancouver’s best known performers of world dance and music, featuring Gypsy, Flamenco, Indian, Afro-Latin and Persian music and salsa.

Weekends at Chai start on a Wednesday night. This is Chai’s popular event and it’s been going strong for three years, and now it’s supporting Seva. If you haven’t been to a Wednesday night, or have friends from out of town, this event is not to be missed.

Chai Gallery’s owner, Mustafa Nahib, has says he owes his life to nonprofits like Seva. Mustafa and his family were forced to escape from Afghanistan when he was just five and he grew up in refugee camps in Pakistan and India. “I really admire the work Seva does, especially for children. If the eyes are the windows of the soul then Seva has opened many souls to the world, and the world to their souls,” says Mustafa.

Wednesday evenings at Chai are very popular. To make a reservation call Chai at 604-734-5881. Mark your calendar for the second Wednesday of each month and come and say hello.

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Today’s my last day in Tanzania. Mollie and I had a terrific weekend safari to Ngorongoro and Lake Manyara where we saw thousands of wonderful critters, including the sweetest baby elephant. He was so young, he was having trouble using his trunk and he was very awkward on his feet.

Last night it poured and today the cars are slipping all over in the mud. It seems that there are two options — dust or mud. (Like in Kingston, Ontario where they say there are two seasons: construction and winter). Fred, KCCO’s driver, says that we are at the start of the “short rains”, not because of some sort of farmer’s almanac prediction, but because of the fact that Dr. Paul Courtright and Dr. Susan Lewallen will soon be teaching the Nuffield Course on management, something they do every year at this time.

The mountainsides of Kilimanjaro and Meru are lush and green, but en route to Manyara we passed through miles and miles of very parched land. The Maasai with their herds of cattle must find life in the dry season very hard. Most of the rivers and watering holes were bone dry. I kept wishing we could give them a bit of our Vancouver rain.

I wish I had time today to join the field teams one more time. But I’ll stay in the office and gather photos and write reports. On my return to Canada, I’ll put together a film with video footage and stills, to show the work here and post it on YouTube so that you can get a sense of what I’ve been talking about.

Thanks for reading the blog. Please visit Seva Canada’s website at www.seva.ca.

Assante sana (thank you very much in Swahili),

Heather

It’s too bad that I can’t upload any images or video footage while I’m here in Tanzania. Thanks to the loan of David and Diane Hardouin’s video camera, I’ve been able to film quite a lot, including the patients being screened at the Direct Referral Site, the work of the “sentinels” (women working to find the people with sight problems in their communities), the trachoma field work and more. I hope to get even more photos and video footage in the coming days, and with Serena, Deborah and Cindy’s help, make a little film on my return.

Yesterday the visiting team of occuloplasty surgeons from the US were operating in the new operating theatre in the KCCO building. Exciting stuff! If possible, today I’ll put on a surgical gown and take some photos and film a surgery (no gory stuff though).

Kilimanjaro itself has been a bit elusive — covered in cloud most of the time. On clear days, you can see it perfectly from the KCCO offices.

The Workshop commences in 1/2 hour so I’ve got to dash.

Heather