My History with CARPA & PHOTOS

The limited understanding of CARPA has had a profound impact on my life.

Time and again, I have been prescribed medications and treatments that, instead of providing relief, triggered severe and debilitating symptoms. This is not just my reality it is a critical warning.

These photographs, taken between 2013 and 2014, capture my early struggles with this rare condition and its severe and widespread symptoms.

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2013

January

58 kilos, no allergies to medications, food, or liquid.

2013

December

8th to 14th

Seven days (7) in 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) is a rare, non-allergic condition characterized by recurrent swelling of the skin, gastrointestinal tract, and upper airways, typically in adults over 40, without a family history of the disorder.

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

Several skin allergies

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 pain sensation

Pain

Insomnia

Fatigue

Painful burning allergy

"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 allergic reactions to certain medications/such as Carpa, this can easily become life-threatening.

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.

Hives can be caused by various medical conditions, including allergies, blood disorders, hormonal imbalances, infections, and even cancer.

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

Dermatographia, also known as "skin writing," is a rare skin allergy that affects about 5% of people.

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

The cause of dermatographia is unknown, but it can be triggered in some people by stress, medications such as penicillin, or other chemicals.

My symptoms range from mild discomfort and pain to severe, life-threatening allergies that affect multiple body systems, including anaphylaxis.

2025

I still suffer from one or several of these symptoms every day.

Acute stabbing abdominal pain that begins as mild palpitations and worsens into severe pain, often prompting multiple emergency medical visits throughout the year.

I also suffer from abdominal pain that occurs during bowel movements several times a month.

Understanding the causes and implications of such pain is essential for proper management and care.

Itching (pruritus) in my feet, arms, back, and hands.

Raised welts that develop minutes to hours after taking medications, along with skin that resembles red burns.

A red, itchy, dry, scaly rash that may last for hours to days.

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.

Breathing issues can vary from mild shortness of breath at least once a week to severe airway constriction that causes a choking and strangling sensation at least once a month.

After taking certain medications, these reactions can occur within minutes or may take several days to develop.

Joint and nerve pain that ranges from mild to severe.

Sometimes, it feels like a sprain or a broken bone.

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.

Anaphylaxis

An undiagnosed disease refers to one or more medical issues for which doctors have not been able to identify a cause.

Often, this suggests that the underlying symptom is an orphan disease such as Carpa, which is why it goes unrecognized. 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

Orphan and Rare Disorders
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Credits:

V. Von Holm