Since 2014, the year I started my PhD, I have been struggling with a chronic condition. Quite suddenly, I noticed my health deteriorating badly. Swellings begun to appear all over my body, and I started losing my mind a bit. I had no idea what was going on. I felt demoralised and did not want to leave the house at all. After several visits to hospitals and clinics, I was told that it is likely that I suffer from a condition known as acquired angioedema. I had never heard of it before. It is treated as an allergy. However, I do not think it is right. Allergies are usually managed with antihistamines and a well-balanced diet, but my condition does not respond to medication well. I tried whatever I was prescribed by doctors and nothing helped. After several frustrating years, I gave up seeing doctors altogether and begun to search for alternative treatments. I took ayurvedic potions and bio-energetic tea. I even tried acupuncture and went vegan and gluten-free. It turned out that a controlled diet alone does not do the trick. I still take daily high doses of antihistamines to keep me functioning on an acceptable level.
Through notes and photographs of my face, eventually, I managed to understand my condition a bit better. I amassed a huge number of images and gathered information that helped me monitor the flare-ups and predict the days ahead. Combining diet, medication and visual information, I think I found a balance, but not a way to get rid of it completely. In the end, I need to accept that it will stay with me for ever. I might not die of it, but surely with it. In a way, I mapped out my condition as an artistic project, parallel to my PhD. I noticed that seeing it positively helped me to focus and pay more attention. So, I am sharing here over 100 images under the title of Autoimmune Selfies just to get it out there. I am not necessarily looking for attention or wanting people to feel sorry for me. It is just a matter of sharing my condition openly, as it could help other sufferers as well. Not many people get to see my deformed face. I understand that I am older now and it is part of being alive. The body is weak. So, let’s let it out! It might help me overcome some of my frustrations.
Note that the frequency of the flare-ups is varied – weekly to bimonthly – and it happens all over my body, tongue, throat, feet, genitals and all. It is a combination of urticaria, angioedema and acute cluster headaches. We still do not know exactly what I have, but I know that, in the past, it was treated as a problem associated with the nervous system. Another curious fact is that I tend to get worse around the full moon. So, if you do not believe in astrology, believe me, the moon affects it greatly. I am not so sure about the planets though 😉 Another thing that has not been identified is the supposed traumatic episode that took place in order to trigger my condition. Is it PhD stress? We might never know. Surely, the PhD contributed to major flare-ups. I noticed that stress plays an important part. Now that my thesis has been approved, I hope my health will improve.
Angioedema | Autoimmune Disease | Allergy | Urticaria or Hives | Antihistamine | Cluster Headache | Alternative Medicine | Ayurveda | Bio-Energy or Vitalism | Acupuncture | Veganism | Gluten-free Diet | PhD | Artistic Research
themelopedia 
oh wow, Marcelo, never noticed that before. Thanks for sharing. Your lips and/or eyes look sometimes like you were biten by a mosquito during the night. I hope the symptoms will slwoly disappear now that you have got your PhD! Take care
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Thanks, Vincent. I managed to keep it hidden as much as possible through my notes and research. Very few people have actually seen my flare-ups. Best, Marcelo
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