Scientist in the US have discovered that PAH is characterized by overexpression of the protein Notch-3. The discovery, presented 25th of October, is described as ground breaking for future medicins for PAH. It will be interesting to see how long it will take from discovery to a medicine. 5 years, 10 years?
http://health.ucsd.edu/news/2009/10-26-pulmonary-arterial-hypertension.htm
Hi Patrik and family !
ReplyDeleteWould you be interrested in meeting with other parents to children with PAH ?
The swedish patientassociation are willing to support such a meeting economical. Maybe not with the hole amount, but some of it, as we will have long way to travel to meet. I hope we will be parents from Sweden, Denmark and Norway.
Best regards, Kirsten
Hi Kirsten,
ReplyDeleteI think it would be great to meet other parents. Have you been in contact with other parents about this?
Patrik
Yes and so far four families (one from Denmark,one from Norway and to from Sweden) are positive to meet. I think it will be somewhere in Sweden, Umeå or Stockholm. An invitation will be send to others through their doctors if possible. I have also wrote about it at the nordic/norwegian PAH forum.
ReplyDeleteWarm greetings from Kirsten.
How are you doing ?
ReplyDeleteKirsten in Umeå wonders !
Hi Patrik,
ReplyDeleteWe also have a little boy with PAH, 5 years old. I noticed your links to Revatio. My son also started taking Letairis (ambrisenten) and we saw noticeable improvement. In January we added Tyvaso (treprostinil)to his regimen, , finally saw measureable improvement on his echocardiogram in addition to the daily activity improvements we had seen with Letairis. Are these meds available in Sweden?
Hi Jenifer, I have not heard of these medicins that your boy is taking and I don't know if they are available in Sweden, but I will check it out. It's great to hear that the medicins have had an effect.
ReplyDelete