No matter what disease, at some point you will ask yourself: 'Why do I have this?'
It seems like common answers many AVM patients receive by their doctors include 'you are born this way' and 'we know nothing about it'.
People doing research on this will likely feel insulted by such statements. Much more is known about the cause of vascular malformations than one might expect.
If it makes you curious, this publication will sched some light on the current situation. This is what we really know and it's obviously much more than nothing:
I only asked once…why me? I did not ask a doctor but a good friend. His response was why not you. Who would you choose among your friends to have this nasty beast. I would not wish this horrible monster upon my worst enemy.
Great article ! There is definately a greater understanding of AVMs now than ever , but my worry is that due to lack of funding the relevant process from understanding to specific treatment will take a very very long time , do you know if there are any research bodies who are working or testing news drugs for Avms or again are they just concentrating on Cancers due to less people being afflicted with AVMs ? George
The recent paper I linked to from Mikka Vikkula et al. is discussing basic research. They are trying to understand what vascular malformations are. On molecular level 'blood tangle' means nothing. It is a highly complex process by which vessels form. If we want to know how and why things start going wrong we must first wonder about the nature of these processes in the healthy case. Lots of elements are involved in this and as you see it's a large system - the mechanisms involved are shared among the formation of venes, arteries but also lymphatic vessels. Clinical medicine puts the diseases into small boxes (such as (cns-/peripheral- AVM, AM, VM, aneurysms and all those 'name-syndroms'...) but the nature does not care about such barriers. Hence scientists are looking at the whole picture which involves more than just vascular endothelial growth fractors and their receptors.
If we understand these things well we will have all options for clinical research on the table. I think it's save to say that the complexity of a disease determines how many options of treatment could become available. If there are many enemies, there are many targets :) (think preventive stuff like identification of risk patients and early treatment, gene therapy, targeting of the malformation processes only rather than also healthy process that is e.g. needed in wound healing)
Nevertheless I think right now we would have enough options to enable medication that would at least allow control of present formations.
In your interesting discussion on AVM medication I already added my opinion.
Just look at this table here: http://en.wikipedia.org/wiki/Anti-angiogenics#Summary . Drugs exists that evidently slow down the growth of blood vessels. What's our problem as AVM patients? Right, formation of new blood vessels.
Our doctors won't write us prescriptions for one of these drugs because they are not tested in AVM patients. And that is because industry will not push revenue in the process of running trials, marketing and selling such medication because they will not sell any to AVM patients. We are just too few, it does not count if they look at the figures. Even if we were many, drugs would only be designed specifically for us, if they could be sold expensively enough.
Check the Vikkula et al. paper again. You will find he is cited by quite some other scientists and he can refer to (click his name and pubmed will list all publications). But if you compare the community particularly doing research on vascular malformations to e.g. the one wondering about cancer it is not that much. Also here funding plays an important role. I am really not judging on this but it indeed can be absurd:
I have seen a professor of pharmacology comparing funding of clinical research on cardiovascular disease VS. cancer over like 20 years. Most investments go to cancer. He compared that with the according improvements in treatment and funnily: Cancer cure did not really improve, the same amount of patients will die whereas Cardiovascular improved significantly :) Obviously it is wrong to believe that health care moves in the direction where the actual larger use for patients results.
Despite all of this judging and criticism, I don't want to go all pessimistic on this. People like Vikkula exist and to answer your question - if I would be able and willing to fund AVM related research, his lab would be the first to receive my money. My motivation would be to push basic research about AVM with the aim to see better management of such conditions as we face it one day.
Clinically using present knowledge in AVM patients is a different question. No clue who does that.
Yes, a real heavy weight. Maybe I will write a short review about it that is easier to understand for non-scientists.