I am very excited as more and more good news is coming up for future new treatments. I want to share this because, since I am a primary lymphie for about 11 years now in both legs, it is VERY important to finally see that it is not an endless road anymore. For years I have heard the same over and over again 'there is no cure and nothing in the pipeline'... The prospect of better treatment options gives me hope and courage to continue with this time and money consuming conservative treatment to keep it under control IN the mean while... The idea that it is not for ever anymore is very very motivating. So I want to share this with you!
There is a clinical trial for primary lymphedema going on in Japan (gen technology) called Collategene and sounds very promising.
Lymfactin is being developed to combine with a lymph node transfer in Finland.
In Stanford Hospital they are doing clinical trials with the already existing and FDA approved drug Hylenex.
And now there is good news again from Fibralign that develops a Biobridge to combine with lymph node transfer surgery! It can be on the market in 2015 ! That is in a few months.
The first one is for primary, the others are for secondary lymphedema. They all show very promising results!
This is a link to a blogpost about the Biobridge. It is a very informative blog, and really worth wile following!
Thanks to many support groups there is finally interest in this disease !
On this site they are doing a lot to build awareness and they organise a Walk in september to raise more awareness and more funding for research that will finally lead to a new treatment.
I am very pleased with this fast development and I can only thank all these organisations that invest time and money to finally help us fellow lymphies! With this primary condition, in my case definitely genetic, it is so nice to hear, not only for me, but eventually when I have kids there will be something available for them....