Paroxysmal Nocturnal Hemoglobinuria

Hi everyone. Thanks so much for joining. We are growing pretty quick! I am seeing a lot of people posting about having multiple conditions. I’m also reading some folks are just recently diagnosed and looking for tips for themselves or a loved one. I thought it might be interesting to follow up on the earlier question of “what caused your autoimmune condition” to explore what we think or understand about how/why our second, third+ conditions came to be.

For me, I only had one disease for 15 years (#AplasticAnemia that morphed into #PNH , which is a pretty normal disease progression). With treatment, I was able to live a pretty normal life - so much so that I was able to join a rowing club, which was a sport I had loved when younger. It was a great community organization located in a low-income area and they made it affordable for anyone who wanted to row. I had a lot of friends there and it was a big part of my life.

Over a couple years I got stronger and was able to join a boat with the stronger guys on the team and we became competitive. It was amazing to be able to be a part of that 4-person boat and we started preparing for a race. Then two things happened that I wish I had been more careful about - because I pushed myself too hard and I think that caused my second #autoimmune condition.

The two things were that the boat had a pull to one side, and then one of the other guys got switched out with a rower who had less experience. It was a “sweep” boat which means each of us only had one oar - 2 of us rowing on one side and the other two pulling on the other side of the boat. The way it worked out, the newer/weaker rower was paired up with me. The two other guys were super strong, over 200lbs each and super strong - and then on the other side was me with my autoimmune #Anemia , trying to pull harder to support the newer guy, so the boat would stay straight. What’s more, the boat’s rudder problem meant it was pulling to our side already, and we had to make up for that as well.

This played out in a few practices where the boat would be turning and my teammates would be yelling for us to pull harder to keep it straight. It was really intense work. After, I remember saying kind of quietly, this is a little too much for me. I wanted them to hear me and suggest switching seats to balance things out. What I look back and wish I had done differently was to really speak up for myself and say, Hey I need to switch seats, I can’t make up for this imbalance. I wish I’d listened to my body and accepted my limits. But I didn’t want to stick out or bother anyone, so I kept trying to make it work. I think this was my mistake.

Eventually it was race day and my boat was scheduled for not one but two 1,000-meter sprints. At the end of the second one, pulling as hard as I could, I felt like my lungs got all gravelly and sharp, like I’d breathed in a ton of smoke or singed my lungs somehow. Over the following year, I developed a strange cluster of symptoms that an allergist/immunologist eventually concluded was probably #MastCellActivationDisorder or Syndrome (#MCAS /#MCAD ), a dysregulation of the cells that store leukotrines, cytokines, histamine & more—things that help us fight off allergens and invaders and rally the rest of the immune response. It turns out that river I rowed on in that low-income community has one of the highest concentrations of pollen and smog, and was also a decommissioned superfund site. All toxins that I was sucking into my body super deep as I rowed and breathed as hard as my lungs could work.

To this day, I’m super sensitive and knocked out by any amount of pollen in the air and wear a mask outside most the time, even while taking my doctor’s recommendation of 4x the RDA of Zyrtec, plus an antihistamine that’s not even approved in the US, plus a nightly asthma maintenance QVAR puffer. My mast cells got way overstimulated or something during rowing that year, maybe that specific second race, and now they are trigger-happy to spill their immune response contents into my bloodstream, causing me to go short of breath, flush & itch everywhere, and cause my bowels to vacate at the slightest provocation.

I’m a bit of a storyteller and I know this is long, but I think it’s important to remember that with systems as sensitive as ours with autoimmunity, even isolated instances of intense stress or overdoing it can push us over the threshold of what our bodies can manage, and sometimes lead to lasting/lifelong effects like additional autoimmune responses.

So for those of us who are new as well as those of us who have been living with #autoimmunity for years, the advice to “take care of ourselves” is super important and something a lot of us may need to learn how to do. I never learned how to identify or respect my limits growing up, in fact I was kind of required to constantly live beyond my limits. I think that led me to chronically push myself harder than was healthy and now I have a few autoimmune diseases to show for it now. We can’t always control or prevent stress that comes our way, but I think we can avoid piling it on with some of our decisions.

So I am working on and hope you all can give yourselves permission to say no, not feel guilty for resting & recuperating, speak up when things are too much, and learn to love the experience of our bodies just as they are.

Love you all. If you have stories to share, I would love to hear them,

Hi everyone. Thanks so much for joining. We are growing pretty quick! I am seeing a lot of people posting about having multiple conditions. I’m also reading some folks are just recently diagnosed and looking for tips for themselves or a loved one. I thought it might be interesting to follow up on the earlier question of “what caused your autoimmune condition” to explore what we think or understand about how/why our second, third+ conditions came to be.

For me, I only had one disease for 15 years (#AplasticAnemia that morphed into #PNH , which is a pretty normal disease progression). With treatment, I was able to live a pretty normal life - so much so that I was able to join a rowing club, which was a sport I had loved when younger. It was a great community organization located in a low-income area and they made it affordable for anyone who wanted to row. I had a lot of friends there and it was a big part of my life.

Over a couple years I got stronger and was able to join a boat with the stronger guys on the team and we became competitive. It was amazing to be able to be a part of that 4-person boat and we started preparing for a race. Then two things happened that I wish I had been more careful about - because I pushed myself too hard and I think that caused my second #autoimmune condition.

The two things were that the boat had a pull to one side, and then one of the other guys got switched out with a rower who had less experience. It was a “sweep” boat which means each of us only had one oar - 2 of us rowing on one side and the other two pulling on the other side of the boat. The way it worked out, the newer/weaker rower was paired up with me. The two other guys were super strong, over 200lbs each and super strong - and then on the other side was me with my autoimmune #Anemia , trying to pull harder to support the newer guy, so the boat would stay straight. What’s more, the boat’s rudder problem meant it was pulling to our side already, and we had to make up for that as well.

This played out in a few practices where the boat would be turning and my teammates would be yelling for us to pull harder to keep it straight. It was really intense work. After, I remember saying kind of quietly, this is a little too much for me. I wanted them to hear me and suggest switching seats to balance things out. What I look back and wish I had done differently was to really speak up for myself and say, Hey I need to switch seats, I can’t make up for this imbalance. I wish I’d listened to my body and accepted my limits. But I didn’t want to stick out or bother anyone, so I kept trying to make it work. I think this was my mistake.

Eventually it was race day and my boat was scheduled for not one but two 1,000-meter sprints. At the end of the second one, pulling as hard as I could, I felt like my lungs got all gravelly and sharp, like I’d breathed in a ton of smoke or singed my lungs somehow. Over the following year, I developed a strange cluster of symptoms that an allergist/immunologist eventually concluded was probably #MastCellActivationDisorder or Syndrome (#MCAS /#MCAD ), a dysregulation of the cells that store leukotrines, cytokines, histamine & more—things that help us fight off allergens and invaders and rally the rest of the immune response. It turns out that river I rowed on in that low-income community has one of the highest concentrations of pollen and smog, and was also a decommissioned superfund site. All toxins that I was sucking into my body super deep as I rowed and breathed as hard as my lungs could work.

To this day, I’m super sensitive and knocked out by any amount of pollen in the air and wear a mask outside most the time, even while taking my doctor’s recommendation of 4x the RDA of Zyrtec, plus an antihistamine that’s not even approved in the US, plus a nightly asthma maintenance QVAR puffer. My mast cells got way overstimulated or something during rowing that year, maybe that specific second race, and now they are trigger-happy to spill their immune response contents into my bloodstream, causing me to go short of breath, flush & itch everywhere, and cause my bowels to vacate at the slightest provocation.

I’m a bit of a storyteller and I know this is long, but I think it’s important to remember that with systems as sensitive as ours with autoimmunity, even isolated instances of intense stress or overdoing it can push us over the threshold of what our bodies can manage, and sometimes lead to lasting/lifelong effects like additional autoimmune responses.

So for those of us who are new as well as those of us who have been living with #autoimmunity for years, the advice to “take care of ourselves” is super important and something a lot of us may need to learn how to do. I never learned how to identify or respect my limits growing up, in fact I was kind of required to constantly live beyond my limits. I think that led me to chronically push myself harder than was healthy and now I have a few autoimmune diseases to show for it now. We can’t always control or prevent stress that comes our way, but I think we can avoid piling it on with some of our decisions.

So I am working on and hope you all can give yourselves permission to say no, not feel guilty for resting & recuperating, speak up when things are too much, and learn to love the experience of our bodies just as they are.

Love you all. If you have stories to share, I would love to hear them,

#ParoxysmalNocturnalHemoglobinuria

#ParoxysmalNocturnalHemoglobinuria