3 ms·

Thank you for bringing HN community's awareness about SLA. My mum has been struggling with SLA since January and now at an advanced stage. As a reminder, there

Thank you for bringing HN community's awareness about SLA. My mum has been struggling with SLA since January and now at an advanced stage. As a reminder, there is currently no treatment and patients are told there is no revert back and that what's gone will always be. In addition to express a second time my gratitude to anyone working on the topic or just bringing public awareness about it, I wanted to mention a few things about the current situation for people suffering from that or any severe disease/rare disease potentially: - Covid is making everything extremely challenging. Hospitals and doctors seem to be overwhelmed and communication/examination is very slow or difficult. I really hope that, despite the risks and consequences of the pandemic, we don't forget other diseases are still here and people are suffering from them. - She lives in France and not in a metropolitan area (somewhat close to Paris). When the only hospital able to receive people affected with the disease is not responsive, there is no alternative. We wish some private, specialized hospitals or medical center could assist her when needed. - We have very little to none information about the current research and trials about the disease. We would be very grateful from any good source of information (for patients and helpers) - thanks to this discussion, Jean-Pierre I have just bought your book which I think will help with this point. - ALS is extremely distressing and devastating for both the people sick, but also helpers and family. It mentally affects in ways we couldn't imagine before and I wish psychological support wouldn't be opt-in. - Admin work around the disease is mind boggling. Luckily my dad has been able to retire and exhaust himself between personal care, day and night, and admin non sense. It really shouldn't be. We are very left alone when facing the disease and patients don't know where to look. It has been a reminder to be grateful for the moments we are able to live with our loved ones. Additionally, I have a solid dev background and if there is any project on the topic I could join and help to improve the research or any of the pain points mentioned above, please contact me.

JPLeRouzic 6y ago
Thierry, Thanks for your kind post. I am sorry that your mother has SLA. Keep hope, not all ALS cases are similar, some are less frightening than the textbook ALS. In France as in other countries there are ALS centers or ALS clinics. I hope that your mother's neurologist discussed about exams at the most convenient SLA center [0 -1]. Unfortunately and as recounted by "Agence Régional de Santé", patients' outcome is better in "CHU" than in other French hospitals. At the moment there are two drugs, Rilutek and Edaravone. Make sure your mother got also Edaravone, it was not prescribed to my uncle. And as Herodotus38 told in another thread there are encouraging results from a clinical trial about AMX0035, a combo of two common drugs. In a few months we will have the results about Arimoclomol from which I expect really good news, and also about Nurown, a new kind of therapy. All those drugs do not heal but at least they buy time. Jean-Pierre [0] https://portail-sla.fr/liste-centres-labellises/ https://portail-sla.fr/liste-centres-labellises/ [1] https://www.encals.eu/centres/ https://www.encals.eu/centres/
- tbronchain 6y ago
  Thank you Jean-Pierre for taking the time to answer. She is followed by the CRC SLA Paris/Salpêtrière. The center has been closed march-june as it was given to Covid patients and since then they seem to be struggling. She's been put on Riluzone, she asked for other drugs but she got told there is none - we have never heard of Edaravone before, thanks for advising and we will look into it.

JPLeRouzic 6y ago

Thierry, Thanks for your kind post. I am sorry that your mother has SLA. Keep hope, not all ALS cases are similar, some are less frightening than the textbook ALS. In France as in other countries there are ALS centers or ALS clinics. I hope that your mother's neurologist discussed about exams at the most convenient SLA center [0 -1]. Unfortunately and as recounted by "Agence Régional de Santé", patients' outcome is better in "CHU" than in other French hospitals. At the moment there are two drugs, Rilutek and Edaravone. Make sure your mother got also Edaravone, it was not prescribed to my uncle. And as Herodotus38 told in another thread there are encouraging results from a clinical trial about AMX0035, a combo of two common drugs. In a few months we will have the results about Arimoclomol from which I expect really good news, and also about Nurown, a new kind of therapy. All those drugs do not heal but at least they buy time. Jean-Pierre [0] https://portail-sla.fr/liste-centres-labellises/ https://portail-sla.fr/liste-centres-labellises/ [1] https://www.encals.eu/centres/ https://www.encals.eu/centres/

tbronchain 6y ago
Thank you Jean-Pierre for taking the time to answer. She is followed by the CRC SLA Paris/Salpêtrière. The center has been closed march-june as it was given to Covid patients and since then they seem to be struggling. She's been put on Riluzone, she asked for other drugs but she got told there is none - we have never heard of Edaravone before, thanks for advising and we will look into it.