This article was written by our member Les Duncan:
It stinks to have an incurable illness, with an unpredictable pattern, and no treatment other than brain surgery! So, what can those of us who suffer from CCM do about it?
For me, a person who has had five hemorrhages in the brain and brain stem, two brain surgeries and several major strokes, I want to do everything I can so that the mysteries of CCM are solved.
Why do some cavernous angioma bleed and others do not? How can one prevent a hemorrhage in the first place? Is it diet, activity level, or medication, or a combination of factors? These are the questions I am looking for answers to – not only for my sake but for the sake of my children, grandchildren, and many friends who have Cavernous Angioma.
I recently discovered that Angioma Alliance has two programs to help find the answers to these questions and more. The DNA/Tissue Bank provides medical researchers with biological cavernous angioma tissue samples and medical history for research projects. The International Cavernous Angioma Patient Registry provides those of us with cavernous angiomas the most up-to-date information about research projects and clinical trials that are available for participation. Both the DNA Tissue Bank and the International Cavernous Angioma Patient Registry are open to adults with cavernous angiomas and/or children who have the condition. It is so easy to participate, and it didn’t cost me a cent!
Initially I had many excuses for not participating. I feared it would be costly – it wasn’t. I worried that the process would be burdensome and time consuming – not so. Angioma Alliance does all the heavy lifting. I had visions of completing reams of paperwork, when in fact, Angioma Alliance staff did all of that for me. And I had privacy concerns. But Angioma Alliance guaranteed my privacy and spelled out exactly what my tissue, blood sample, and how my DNA results would and would not be used.
Here is how the process of signing up worked for me:
1. I joined the patient registry by completing an on-line patient questionnaire at www.angioma.org/registry. It was quick (about 20 minutes) and easy to click on answers to multiple choice questions like how many lesions I have (it is OK if you don’t know) and do I have other diagnosed vascular malformations. They also wanted to know how many CCM hemorrhages and surgeries I have had. If you don’t have access to the Internet someone at the Angioma Alliance will take your information over the phone.
Now that I am registered in the international program, I will know exactly what clinical trials and research are being conducted to unravel the mysteries of CCM, and I may even be given the opportunity to participate in some of these activities. I like the feeling that I can help.
2. Joining the DNA/Tissue Bank was also painless, thanks to the support I received from Angioma Alliance. First, I accessed an on-line consent form at www.angioma.org/dna. This is a 14-page, rather ominous, legalese document with lots of places to sign and initial. It might be enough to scare you away, but fortunately I spoke with Angioma Alliance Chief Scientific Officer Dr. Amy Akers. Dr. Akers confirmed my suspicion that this is just the reality of medical research world today – consent forms, privacy, et al. So I carefully read the papers and then signed and initialed where indicated. Again, this can be done via the telephone and U.S. Mail if you don’t have access to the Internet.
3. Next the Angioma Alliance’s registry nurse called me to do a short interview, at my convenience, to determine what hospitals and doctors diagnosed and treated my cavernous angiomas. Angioma Alliance used this information to prepare consent forms to obtain copies of my MRI’s and cavernous angioma tissue samples for the cavernous angioma I’ve had surgically removed. The Alliance did all the heavy lifting. All I did was sign them and send them back to the Alliance. They, in turn, got them to the respective agencies. Once each year they will call me again to do a short update.
4. Next, Angioma Alliance sent me a blood sample collection kit. The kit included two vials to be filled with blood; a pre-paid FedEx plastic envelope, plastic bags to send the sample onto the ‘lab’, and a small ice-pack to keep the blood from spoiling during shipment.There were also easy instructions to my doctor/lab about how the blood was to be drawn, plus instructions for me about how to package and ship the samples to the lab.
I took the kit to my family physician during a routine office visit. He instructed his lab to fill the vials. I called FedEx to arrange for them to pick up the packaged return at my home at a specified time later the same day. Angioma Alliance even provided the 1-800 number for FedEx.
I can’t tell you how complicated I imagined all of this would be, but it was not – not at all! Angioma Alliance not only paid the FedEx shipping costs, they also paid for the subsequent DNA testing.
So the ‘lab’ now has samples or my surgically removed CCM tissue; copies of my MRI’s and blood samples for DNA analysis to help them learn more about CCM’s.
5. I am looking forward to participating in the more in-depth interview I will have with Angie Prolog, the registry nurse for the DNA/Tissue Bank. I understand that once my medical records have come in and she has had a chance to look through them, she will let me know. Then, we’ll set up a time to talk in order for me to fill in any blanks in my medical history. They warned me that I should expect to be on the phone for 30-60 minutes, but this is a one-time conversation.
6. Finally, I expect to hear from Angioma Alliance once a year to update my information for the DNA/Tissue Bank. I’m assured this will be a very short call – usually no more than 10 minutes.
I want the medical community to know more about CCM’s and why they bleed. For me, it helped to enroll in the DNA/Tissue Bank and International Patient Registry. It was not time consuming, not costly, not burdensome, and there is so much good that will come from it. I now feel like I’m part of the solution and I’m urging all my CCM friends to be part of the solution too.