column logo Alithea Athans

There are so many interesting treatments for an array of diseases that you can find when searching for answers. Unfortunately, when it comes to rare diseases there are typically few treatments and in some cases none.

I have been living with cold agglutinin disease (CAD) coming up on 2 years now. There are a few options and a couple of others on the horizon that are used to maintain a normal life but so far there is no absolute cure. 

My quest is to keep looking to see if anyone, anywhere has tried something that is medical in nature but uncommon or has not garnered enough attention but should at least be discussed. One such therapy is hyperbaric oxygen therapy (HBOT). I was surprised to find a discussion amongst other CAD patients on the use of HBOT. I have always associated HBOT with astronauts and scuba divers to treat the bends. I had no idea that it was used to treat so many conditions from inflammation and tissue damage to cancers and autoimmune diseases. 

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I found an article specific to CAD. There was a case of an 84-year-old woman who had a history of primary CAD. She had developed severe nasal ischemia from CAD. Her nose was black, and the tissue was dying off. They used a combination of drugs with HBOT, and she subsequently healed completely. 

As with this patient, anything can happen when you have CAD. There is a neverending list of symptoms that occur with this disease. They occur during the colder weather but as I have learned they can also appear randomly for what seems like no reason.

Even though it is summer, and the weather has been perfect, I still experience hemolysis, but on a much lower level. I have a weird rash on my arms, and petechiae on my stomach and if I have the air-conditioning too high, my heart begins to beat fast without movement and my joints will hurt.

What caught my eye about HBOT is that it helps in reducing inflammation. In my initial stages of CAD, right as I was being diagnosed, doctors found that my spleen was slightly enlarged and my gallbladder was inflamed, and removal was suggested.

All my blood tests support that my liver functions were doing well. My bilirubin is still very high and has been for the past 2 years. I cannot imagine that would be good for my liver. CAD affects your heart, from heart palpitations to heart failure, and it is taxing on many organs. Briefly, my entire body is constantly at work attempting to destroy my red blood cells, while at the same time trying to clean it all out. As if this is not enough, at least in my case, there seems to be inflammation in my stomach and intestines that comes and goes. 

Read more about experimental therapies for CAD

After looking through all these symptoms—and mind you, some come and go—it only seems logical to look for a way to give my body a break. HBOT will not cure CAD, but it may give my organs the opportunity to breathe, quite literally. This type of treatment pumps 100% oxygen into a chamber, depending on the type of therapy needed, and can last from 3 minutes to 90 minutes. 

The idea of HBOT in my situation is to give my body the reprieve that is needed to eliminate inflammation. Inflammation itself is a precursor to so many other diseases, so why not give my body the opportunity to calm things down. Even if temporarily, it allows enough oxygen to reach every inch of your body. It may eliminate some of the exasperations or take away the tingles in my fingers and toes, and even repair some of the tissue damage being caused by CAD.

While it sounds like a great idea, it is a discussion for my doctor. I do not want to try anything unless I have all the facts.