Hi all, haven’t been to this site in quite a while. I have just been diagnosed with a very rare genetic disorder known as Acute Intermittent Porhyria. I will make this short… I am hoping, even though it is rare, that there might possibly be even one triathlete who reads this forum that has this same inherited disorder and is a triathlete. I am sorry if you do, but I have lots of questions about how you handle training with this. I am going to be doing my first ironman (Lake Placid - yiiiipppeeee!!) in July and am hoping if there is someone out there with this disorder that I could touch base with you and get some help from you as far as training wisdom with this. I have a pretty bad form of it, it took my grandmother at 38 years old from nervous system - thus cardiac and respiratory failure… don’t want to be added to the list. I was in the hospital 16 days ago and it was a bad episode so I am still recovering. I would appreciate any assistance from someone in the “know”. Thanks.
Totally new condition to me as well. You are probably well ahead of me, but you might try to find an online support group or a usegroup (older terminology). I would think you’d have a better chance of finding some one knowedgeable.
Sorry, I’ve never heard of AIP, but I just looked it up so have an internet understanding (if you know what I mean). If you’re willing to share, how much does it affect you now? From what I read there is a lot of variability in severity. I ask because depending on your situation there may be opportunities for you with PC triathlon…
Thank you for your kindness, but I am not ready to go to the pc div. When I am inbetween attacks I am quite functional. It is when they come on frequently that gets me in a downward spiral. This last one has taken me over 17 days to recover from and I am still not completely there yet, breathing is finally coming back to normal, but the nervous system is still rebelling with tons of spasming just about every 15-20 seconds. As for severity…very bad. When I was 23 I had a mild heart attack from it. Back then, the mechanism was unknown. Come to think of it… triathlon may have saved my life since I ingest so much sports drink it has helped (without me realizing it) to busy out my liver. It is not enough to keep the bad attacks from happening, but I no longer get the severe tachycardia with it. In any case, I don’t want to take up space here, but was just hoping on a site like this that surely someone else must have this genetic disorder. Actually glad for all that there isn’t so far. Thank you very much for your idea to contact support groups, I will keep looking, but I think most folks are either frightened of the possibilities or are not well enough to train in this intense of a sport with this disorder. Intraveineous glucose can help lessen the attack, but do you think an IV port would be considered an assist in ironman? … Thanks again everyone, you have all been very kind. If anyone else is doing Ironman Lake Placid, GOOD LUCK!!
Hi Lauren,
I wouldn’t write off PC division so quickly if I were you… There is a class called “Les Autres” that is for people with MS, MD, and other ‘similar’ disabilitites. Essentially, the non-amputee, non-visually impaired, non-spinal chord injury people who are not able to train and/or race on a level field with able-bodied people due to a medical or physical condition outside of their control.
In my experience very few people abuse the class, but there are certainly some people who are more affected than others. From what you write my guess is that you are not the least affected athlete racing in the class. USAT (through the hard work of Jon Beeson) provides support for us to attend a few major events throughout the year. The goal is to demonstrate that there are enough athletes with disabilities participating in triathlon to have the sport be included in the Paralympic games. At the NY City triathlon last year there were more PC athletes than professionals…
There are other PC opportunities with Ironman (a PC lottery), Xterra (new PC division), and so forth. The Challenged Athletes Foundation can help with grant support for equipment and training. Many race directors will go out of their way to make their event welcoming for PC athletes.
There is nothing ‘easy’ about racing as a PC athlete. Most of the divisions are extremely competitive. For the past 3+ years I have worked part time during the racing season so I can focus on training and racing. Despite that I placed second to superstar David Kyle by about 5 seconds at the NY City Triathlon and again second to David by about 3 seconds at Malibu. We both race Les Autres with very different disabilities, strengths, and weaknesses. Major Rosell (sp?), who was recently featured on the Hawaii Ironman broadcast, is not the fastest below-knee ironman (by far) nor was he the fastest PC athlete in the race this year (‘One Arm’ Willie took that honor). Racing as a PC athlete does provide a responsibility to educate, inform, and hopefully inspire.
LMK if you want Jon Beeson’s contact info. Getting in touch with him is the next step if you’re interested in getting involved, in helping develop Paralympic triathlon, in having the support to race some major triathlons, and in joining a close community of athletes who will better understand what you are dealing with than most people in the general public. Best reason is it is a lot of fun…
Ryan
… Thanks again everyone, you have all been very kind. If anyone else is doing Ironman Lake Placid, GOOD LUCK!!