LHON PLUS

WHY A ZEBRA...

• Drs at medical school are taught to think that the normal population have
• common medical problems and to think of them like they are "HORSES"
• Patients with mitochondrial disease are very rare. Drs are taught to
• Think of "Zebras" when it is outside the normal population
• When you are diagnosed with LHON PLUS you are very very rare

SO WE ARE ZEBRAS...

SO FEW PATIENTS AT EACH LOCATION

• Makes it hard for connections of common findings between Dx patients
• Makes it so that case reports are published in LHON Plus, not group studies
• Makes it difficult to establish sharing of information between drs (privacy)
• Makes it so that as a group - LHON PLUS is not getting clinical trials
• Makes it so that each patient is heroically fighting this battle independently

SO WE HAVE A WISH

• A wish to establish a support system for LHON PLUS
• To safely share our information and learn from each other
• A group of LHON PLUS patients talking may be more than ever
• has happened for the LHON PLUS community in terms of collaborating
• We are not experts but we are the experts of OUR BODIES

THERE ARE DIFFERENCES BETWEEN LHON AND LHON PLUS

• I think if we work together and collaborate as a team
• We can establish a database of LHON PLUS patients globally
• The dream is to then work by fundraising and applying for grants
• To... Present our cohort of LHON PLUS patients to researchers
• And provide with them the tools that they need to research LHON PLUS

SO ARE YOU READY TO JOIN US?

SO WE WILL BEGIN WITH

• Having a Facebook LHON PLUS group
• Sharing information on and offline of Facebook
• Establishing a database of contacts
• Regular Skype group chat (maybe every month)
• Collaborating with the mitochondrial community

AND FINALLY THE HERD OF ZEBRAS CAN GET