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One Rb World

Earlier this month, we took part in a conference on retinoblastoma in global perspective.
The One Rb World conference brought together people from Europe, North America, the Middle East, and several countries in Africa -- all working with Rb, or themselves touched by it.
The participants were split roughly half and half between medical professionals and parents of children with Rb or Rb survivors (people who themselves had Rb as children).
Most of the presentations during the 2 days of the conference were by doctors, but about half of the time was allotted for discussion, which gave space for testimonials and suggestions for improvements in the quality of care from parents and survivors.
More than once, mothers wept telling their stories -- of the scepticism they'd encountered when first seeking help; of delays in diagnosis, and doctors' egos getting in the way of efficient care.
One of the most memorable presentations was on the psychological effects of Rb treatment -- how the repeated exams and interventions, and the uncertainty about outcomes, might place children and parents at risk of syndromes like Post Traumatic Stress Disorder.
One family that participated, the Lloyds, gave powerful testimony about the psychological effects of Rb exams and treatment on their daughter Daisy.
The world seems a hostile place when you grow up being subjected to invasive medical exams on a monthly basis; and when your family are consumed by worry.
And yet the Lloyds haven’t just suffered in silence.
In 2004 they founded Daisy's Eye Cancer Fund, an NGO that now has chapters in the US, Canada, and Kenya, as well as the UK.
It was Daisy’s Fund that organized the conference.
Rb in Africa
There was a lot of attention to Africa at the conference, for a few reasons: 
  • Africa is the area of the world with the greatest unmet need for Rb treatment. More than 70% of children with Rb in Africa die, compared with less than 5% in Europe and North America.
  • There was a strong showing by Africans at the conference, and by people from elsewhere who work in Africa.
  • Abby White, one of the founders of Daisy Fund, has family connections in Africa: her father was in the 4th generation of a British family in Nairobi. (Diagnosed with Rb by a Kenyan doctor, he was very lucky to survive.)
  • The Kenyan chapter of Daisy Fund is doing great work -- recently spearheading the development of a national strategy for Rb that could serve as a model for the region.
An Ethiopian connection
Ethiopia is immediately to the north of Kenya, and at the moment there is a small trickle of Rb patients from Ethiopia who make their way to Nairobi for treatment.
Through Abby we’ve made contact with several people in Ethiopia who are working on Rb, including families whose children have the disease.
Selam has been corresponding with some of the parents by email. Recently she wrote this to them:
[When Asa was first diagnosed] we had a chance to talk about cases in Ethiopia, and we were sad to hear that there is not much done for those children except enucleation (removal of the eye) to save their lives. Since we heard that, we think a lot about those children and families. We really are happy to be in contact with you so that we can discuss how we can contribute to the care of these children together. Personally I feel that there is a huge gap in awareness of Rb among health professionals and also the public, which contributes to late presentation and death of children. I would love it if you would share your thoughts with me and also on how we can work together to bring a change.
We're hopeful that our conversation with parents and doctors in Ethiopia will lead to improvement in the way Rb is dealt with there.

Asa's latest treatment

In her message to the parents in Ethiopia, Selam also shared our most recent news about Asa’s treatment:
Since [the end of systemic chemo in May] Asa has been on a monthly, scheduled eye examination under anaesthetic. Each time the doctors have examined him, they have seen new tumours, which they have been treating with cryotherapy (i.e with extreme cold).
About a month ago the doctors decided to use a different treatment because the small tumours in the right eye keep coming back. The treatment is called IAM (Intra Arterial Melphalan) and it is delivering the chemo drug directly into the eyeball through an artery in the eye (thankfully his left eye has been stable since May, i.e the end of chemo).
Last Wednesday [October 17] he had an eye examination and there were 5 new tumours in the right eye. The doctors want to give him a second round of IAM, at a higher dosage, and see the change in a month's time.

The second dose of IAM will be given this coming week, on Hallowe'en.
Asa on the day of his first dose of IAM. A doctor marked his forehead with an arrow -- to make sure the drugs were delivered to the right (i.e. correct) eye.

The One Rb World conference was audio-recorded, and the material should be available in 2013 through the Cure4Kids website.
Thanks again to everyone who has contributed to our fundraising for the Childhood Eye CancerTrust. Gifts have continued to come in after the event, including from some anonymous donors.


  1. An excellent post, Jed, and we are so glad you, Selam and gorgeous Asa participated in One Rb World. We have much hope for the future of Rb care in Ethiopia, especially as a great group of medical professionals and families is coming together with keen desire to work together in building up care in the coming years.

    FYI, 50 medical professionals and 12 parent / survivor advocates participated in One Rb World, representing 30 countries, half of which are developing nations. If we include the children present and their excellent carers (both Rb survivors), the ratio of attendees was roughly 2/3 medical professionals and 1/3 families.

  2. Thanks for putting the conference together, Abby! We're looking forward to seeing what more comes of it, including the revised statement on Rb warning signs, and of course the work in Ethiopia.

    I appreciate you correcting me on the ratio of medical professionals to families. I guess the families held their own -- the conversations felt fairly balanced!

  3. So wonderful that there is a community to tap into, but disheartening that so little is done for patients with the condition in Africa. Hopefully that situation will improve over time. I'm sorry those tumors keep growing, and I hope that the doctors can figure out a good way to manage them and wipe them out. Asa is absolutely adorable, even with an arrow on his head!


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Wednesday'sExamination Under Anaesthetic yielded some unexpected news.
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A mixed bag
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One morning recently, when we were trying to get Asa to put on his socks, he asked us, seemingly out of nowhere: “What does it have in it, my right eye?” It was clear he wasn’t in discomfort; it wasn’t that he had a piece of grit in there. He pointed up at his eye with his index finger.
“Well, it’s got jelly in it,” I said. “And a retina, and a lens. And lots of other things we didn’t know about two years ago.” “And what does it have in it, my left eye? Does it have a lens?” “No, your left eye doesn’t have a lens.” “What happened to it, the lens?” “The doctor took it out, because the eye was poorly.” “Was the lens poorly?” “It had gotten --” “Cloudy,” Selam offered. “Yes, it had gotten all cloudy, and you couldn't see well through it. So he took it out.” “Who took it out?”  “The doctor took it out.” “It doesn’t have any lens.” “No. That’s why you have to wear glasses sometimes, so you can see better. And that’s why Mummy patches your right eye sometimes. Because we want you to see as well as …