Living with a condition as poorly understood as C ARPA has profoundly changed my daily life and well-being.
.
Time and again, I have been prescribed medications and treatments that, instead of providing relief, triggered severe and debilitating symptoms.
This is my reality and a critical warning.
These photographs, taken between 2013 and 2014, document the early course of CARPA and illustrate the severity and extent of symptoms prior to diagnosis.
They reflect the initial phase of the disease, during which some manifestations were more frequent and widespread.
2013
June
58 kilos, no allergies to medications, food, liquid, or anything else!
2013
December
8th to 14th
Seven days (7) at Karolinska Solna, Gastroenterology ward.
Symptoms: acute abdominal pain and angioedema.
Failure to diagnose
2014
January 2nd to 10th
Eight days (8) at Karolinska Solna, Hudkliniken ward, vårdavdelning B:13
Symptoms:
Acute Abdominal Pain, Angioedema, Dermatographia
Failure to diagnose
,
2014
January
23th to 30th
Seven day (7) at Karolinska Huddinge, Hematology ward, vårdavdelning M71
Symptoms:
Acquired angioedema (AAE) - a rare, non-allergic condition characterized by recurrent episodes of swelling affecting the skin, gastrointestinal tract, and upper airways. Unlike allergic reactions, these episodes are not triggered by typical allergens and do not respond well to standard treatments such as antihistamines or corticosteroids.
A side effect of medications
Edema of the gastrointestinal mucosa typically leads to severe abdominal pain in the upper respiratory tract, and it is life-threatening.
Failure to diagnose
2014
March 10th to 13th
Karolinska Huddinge, Hematology ward, vårdavdelning M71
Symptoms
Multiple skin allergies - skin symptoms such as redness, rashes.
Lethargic
Pain throughout the body
Itching (Pruritus)
Acute abdominal pain
Failure to diagnose
2014
June 18th to 27
Karolinska Solna, Rheumatology ward.
Symptoms
Itching
Burning, red, and swollen legs generally indicate an active inflammation.
Insomnia
Fatigue
Painful burning sensation
"Lichen Striatus"
Red or flesh-colored, scaly lesions tend to appear on one side of the body. The lesions form a line that sometimes extends the length of the affected limb.
Chronic itching (Pruritus) , the exact cause of the condition is unknown.
Failure to diagnose
2014
Angioedema
Swelling in the deeper layers of the skin that affects the face, lips, eyes, tongue, throat, and other body parts.
Caused by a life-threatening allergic reaction.
Failure to diagnose
2014
June 30th to July 10th
Karolinska, Infectious Diseases Ward
Hives: itchy rashes that appear to move around the body from site to site, creating intense itching.
Failure to diagnose
Scaling Skin
Scaling skin is the loss of the outer layer of the epidermis in large, scale-like flakes. The skin appears dry and cracked, though skin dryness isn’t always to blame.
Scaling skin is also called: Desquamation
Failure to diagnose
Dermatographia occurs when the mast cells in the skin produce too much histamine. The histamine is released with any form of stimulation or pressure applied to the skin.
Signs and symptoms of dermatographia include:
Raised red lines
Swelling, Inflammation
Hive-like welts
Itching
The signs and symptoms may occur within a few minutes and usually disappear within 30 minutes.
However, it can also progress more slowly and last from several hours to several days.
The condition itself can last for months or years.
Failure to diagnose
My symptoms ranged from mild discomfort to extreme pain and severe, life-threatening allergies that affect multiple body systems - anaphylaxis.
Anaphylaxis is a severe, rapid, and potentially life-threatening allergic reaction affecting the whole body, often occurring within minutes of allergen exposure, but not always, in my case I have reacted hours later.
Symptoms include hives, swollen throat/tongue, breathing difficulties, and low blood pressure. Immediate treatment with epinephrine is crucial, followed by emergency room care.
2026
I wasn't diagnosed with CARPA until 2016, so at the time, neither my doctors nor I realized that the very medications meant to help me were actually the ones triggering my reactions.
Although I’ve learned to manage CARPA by avoiding what I’ve discovered over the years to be some of its triggers—most medications, cleaning products, wine,
blueberries, tap water, among other irritants. I still find myself coping with symptoms every day.
And just when I think I've figured it out, something new surfaces—like this year, when I reacted not to one but two laxatives before a colonoscopy.
It's a constant reminder to stay vigilant and keep learning about this condition.
Throughout many years, I experienced recurrent acute abdominal attacks characterized by a sudden onset of mild cramp followed by hours of escalation into severe, debilitating pain.
The intensity of these episodes is extreme, and I had to make multiple visits to the E.R. each year.
During severe attacks, I still require morphine injections for pain control
But although I continue to experience this abdominal symptom, the frequency of these episodes has decreased significantly, and now they occur only once or twice per year.
This improvement appears to be associated with my strict lifestyle modifications, including the elimination of known triggers, the preparation of fresh meals at home, the avoidance of fast food, and the minimization of exposure to public environments to reduce the risk of germs and viruses.
Despite this progress, I still do not fully understand what triggers the inflammatory response in my gastrointestinal system, and occasional attacks continue to occur.
Also several times a month I suffer from abdominal pain that occurs during bowel movements
These symptoms may still appear daily.
Unfortunately, because of my severe allergies, the only pain relief I can receive today is intravenous morphine, which causes intense nausea and other side effects.
Anaphylaxis prompts the immune system to release a flood of chemicals that can result in shock—blood pressure plummets suddenly, and the airways constrict, hindering breathing.
Anaphylaxis symptoms are life-threatening and require immediate emergency attention.
Greater awareness, dedicated research, and the establishment of clear clinical guidelines are urgently needed to protect patients and ensure that no one else endures avoidable harm from this condition
Credits:
V. Von Holm