This weekend I registered to attend an information session at the hospital, put on by the Network of Rare Blood Disorders Organizations.
The day included a morning of general information about the organization and how you can get involved, a presentation from one of the top hematologists, one of the top specialists in the treatment of hemophilia, and a discussion on the NRBDO patient services clinic that is (surprisingly) located in Calgary. Then, a panel of physicians was involved in a short Q & A session before lunch.
Here is the 'about us' section of the NRBDO home page at NRBDO.com:
After lunch there were several break-out sessions - two of which I was interested in attending. One specifically on Hereditary Angioedema (including all three types), and the other was on Immunodeficiencies.
My entire reason for going was to learn more about HAE from other patients and physicians, make some important contacts in these fields, and find a way to get registered with the clinic.
The entire day, although a longer day than I have had in months, was worth it. I learned more about my diagnosis and had an opportunity to speak directly with physicians in the field as well as other patients.
BUT
There is one piece of information that I learned that seemed to tower over all of the positive information.
There is CLEARLY not enough education about HAE, and definitely not enough about the other disorders under the NRBDO umbrella.
Statistics estimate that there are probably 700-800 patients in CANADA who have Hereditary Angioedema. Only about 100 of those patients are registered with HAECanada.org (now including myself), which is a patient organization dedicated to the education and the fight to treat HAE and improve the lives of those suffering with the disease.
This Calgary-based Rare Blood Disorders Comprehensive Care Clinic even includes HAE information cards. These patient cards include the definition of Hereditary Angioedema, the risks, complications, common mistakes, and concise instructions on how to proceed with treatment for the particular patient if he/she is in an emergency situation.
Why is this such a big deal?
I have mentioned before that HAE can cause throat swelling that mimics anaphylaxis. This is life-threatening.
And even more importantly:
IT DOES NOT RESPOND TO ANTIHISTAMINES, EPINEPHRINE, or STEROIDS!
So, if staff in the Emergency Room come across a patient with HAE with a throat swell, time might be wasted trying to reduce the swelling with the above three choices.
It may not seem like much, but MINUTES can truly mean the difference between life and death. MINUTES can mean the difference between a permanent tracheostomy and a temporary one.
And if you need a visual, imagine those old quit-smoking commercials that show the hole in the neck to breathe - that is a tracheostomy. Severe HAE sufferers who experience constant swells of this magnitude face this reality. There is even someone in this province, who is younger than myself, who has already had to have the procedure and now has a permanent tracheostomy.
These organizations SEEM to be making headway. HAE is finally included under the umbrella of NRBDO, and it is recognized at this special clinic, and there are those patient treatment cards - which all sounds fantastic and wonderful - but here is the problem:
1. EMERGENCY ROOMS ARE REFUSING TO RECOGNIZE THESE PATIENT TREATMENT PROTOCOL CARDS.
2. SPECIALISTS even in the field of internal medicine and immunodeficiencies are UNAWARE of this specialized clinic.
3. Medications are costing $3000 PER INJECTION, with other medications available only out of country for much more money. (One injection can be used as often as three times per day during a swell, and does not have to be a throat swell). The goal is to treat early to prevent throat involvement.
4. There are so few physicians specialized in this field that there are not enough of them to see and treat each patient with Hereditary Angioedema.
What does this mean?
This means that EVEN IF I carry a card that explains to an emergency room physician exactly how to treat me, that physician may NOT recognize the card and may proceed to do a full assessment and make his/her own decisions based on his/her own experiences. It may sound absurd, but I can tell you that I have first-hand experience with this situation, from a different disease standpoint.
It becomes a battle of egos.
This is NEVER in the best interest of the patient.
This also means that patients - LIKE ME - fall through the cracks. It means that even though I was DIAGNOSED with Hereditary Angioedema close to 2 years ago, I am still on NO medication for it, I have NOT been referred to this magical Comprehensive Care Clinic, and I am STILL FIGHTING. I also had never even heard of this clinic myself.
I cannot tell you how frustrating and terrifying and embarrassing it was to be in a room with roughly 200 people (patients, caregivers, nurses, physicians, alternative health care workers, etc...) and be one of the ONLY patients who had never heard of this clinic and the ONLY patient in the breakout session who is on zero medication for this disease.
If you have ever met me, you will know that I'm pretty decent at holding it together. Well, I couldn't hold it together. I even had to excuse myself to take a moment outside to try and stop crying.
The most ironic part of the entire thing is that I could FEEL the beginnings of an episode while I was in the HAE session, just because I was so upset....
Luckily, with the generous help of my significant other, positive words from other patients and caregivers, we managed to keep me calm enough to avoid a severe and dangerous episode, and keep it to a milder one, with severe nausea and pain but no throat closures or vomiting fits.
Summary
There is still insufficient education - particularly for actual physicians - about this class of illnesses.
The very fact that specialists are unaware of this clinic, and others like it across the country, is unacceptable.
The fact that Emergency Room physicians are not encouraged to communicate with specialists regarding IVIG therapies, and proper emergency care protocol for HAE sufferers, is unacceptable.
Somehow, we need to find ways to encourage caregiver-nurse-homecare-physician-GP-Netcare OPEN COMMUNICATION. Wipe away the issue with egos and start focusing on the actual patient care - bringing it all together.
I ask - PLEASE -
If you are in the medical field, in any way, shape, or form, whether it be Westernized medicine, traditional medicine, alternative medicine, hell, even Voodoo, take a minute to share information on these rare blood disorders.
And if you are particularly intrigued, please join HAECanada.org or HAEi.org (HAE International) as a member. Membership is free and is not exclusive to patients.
As an aside:
When I was first diagnosed with Ulcerative Colitis, over 15 years ago, we were at a similar stage of education. The organization was small, widely unknown, and education was minimal in the medical field. Only in the last year has the development of an actual IBD Clinic been unveiled.
PLEASE - as a personal favor to me - PLEASE don't make me wait another 15 years for people to be properly educated about these life-altering, life-threatening, rare disorders.