Hope!

[kharimata]

Hello everybody!

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!

lymphnodetransplant.wordpre...

Thanks to many support groups there is finally interest in this disease !

lymphaticnetwork.org

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....

Take care!

[lovesradio]

What a great post Kharimata! Every little bit of good news is so welcome. I will have a wee look at the lymphatics site and if good I will ask LSN to publicise

Cheers xx

[lovesradio]

Ahah realised that site is American!! And walk is in New York! But lots of great info too xx

[kharimata in reply to lovesradio]

Yes it is American but I think you can 'join' the Walk too without joining . I mean you can set up a team, collect and donate some money online. They want to get to 60 000 dollar! I have read somewhere that they have worked closely with the Stanford college and that is now where most of the new treatment options are getting developed. So money well spend... When you like them on Facebook you see them posting very informative stuff and it all started with a family who has a child with lymphatic problems ... and this turned out in this organisation.. awareness = interest = new treatment options...

[kharimata in reply to kharimata]

With a rare disease like primary lymphedema we must join hands

[Bluedolffin in reply to kharimata]

Yeah I agree. We should do the ice bucket challenge or something similar to raise money. Are u on Facebook?

[Christo]

A really promising development that could well become a treatment in the future. Please share this with your Medicos & Therapists - the more people who know about this the better. I would willing be ready to be trialed for this treatment.

Thanks for the good news.

Christo

[Ginsing]

I thank you we always need good news it lifts us up and takes the slog of bandaging day after day away for a moment. !

My computer keeps crashing so will return xgins

[Bluedolffin]

The idea that it is not for ever anymore is terrific indeed thanks for sharing!

[alisonlouise4444]

great to hear something positive for the future thanks for sharing like christo i would love to take part in a trial especially a lymphnode transplant !!! x

[Bluedolffin]

Hey folks good news! They are apparently trying to research on a medication called "growth factor" which good extend your lymphs and capillaries!

Check this out: biomedicum.fi/index.php?pag...