It was a struggle to get here bright an early. Earlier than even my normal working time. I made it to the MCEC at 8am. The sun was still rising， hiding behind the clouds.
Metaphorically， Melbourne couldn’t be a better city to represent Lupus.
Because the weather here changes so dramatically within less than 5 hours… As midday approached， black menacing clouds starting to cover the skies again， accompanied by gusty winds， then rain… And apparently thunderstorm later this afternoon.
Much like how I sometimes feel， really.
Just a quick dot point summary on what I have learned from some of the lectures this AM:
- A lot more new genes are now identified that are found in patients with Lupus and those with auto-immune conditions, including “novel genes”.
- The types of “novel genes” or in other words; those genes that only seem to be found expressed in people with Lupus, varies in different groups of ethnicity (european， chinese， korean，americanindian). So, currently, there is not one breakthrough genes that pin-point as the one that could solve the Lupus cure & causal problem.
- Patients who are found to be dsDNA+ and those who are found to be dsDNA- have different symptoms even though they have been classified or diagnosed as having Lupus. dsDNA are markers of lupus and you normally see this in your blood test. Please ask your specialist or GP for more detailed explanation of how to interpret your dsDNA result if you are newly diagnosed with Lupus.
- New emerging studies in China of stem cell therapy. Especially for those patients who are not responding to any current medication treatment for lupus. This includes bone marrow or umbilical cord IV infusion of the mother of Lupus patient. This particular study in a hospital in China by Dr Sun Ling Yun shows ~90% success rate in his patients(defined by reduced disease activity， lower dose of medications including immunosuppressants and steroids etc)
- There seems to be some correlations between patients who experience skin rash and lesions vs those who get renal inflammation or lupus nephritis.
- Patients with lupus show some neurological symptoms e.g. headache， migraines， anxiety disorders， mood disorders etc even though their blood test shows that their disease are not “active” or in non-flare-up state.
- They found that some antibodies bind with “NMDA receptors” in brain cells, causes several reactions which causes the loss of dendritic neurons in the brain; causing neurological symptoms in patients with lupus.
- NMDA Receptors in brain cells are very important in memory and learning abilities.
- More studies are needed to ensure that medications can be developed in order to stop the antibodies to bind with the NMDA receptors in the brain.
*Please be warned that I have simplified and created a very general summary of the lectures as I intend for this information to hopefully be understood by patients who may not be familiar with a lot of medical terms. Please check the website for more details of the presenters and don’t forget to register for the patient program this Wednesday 29th March from 8.30-17.30. Lupus Care Packs will be distributed around 3-3.30pm.)*
I have unfortunately had to head home earlier this afternoon as I could not stand the fatigue anymore. I made it safely home though. It was a bit of a change, driving through different route.
More updates tomorrow.