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Psoriasis diagnosis: Carenity members tell their story

Dec 18, 2019

Being diagnosed with a chronic disease can change a patient's entire life. Read the story of Carenity members living with psoriasis.

Psoriasis diagnosis: Carenity members tell their story

Survey conducted with 151 Carenity members in France, Italy, Spain, Germany, the UK and the US.

epi larmes Patients waited on average 3 years and saw an average of 2 physicians before receiving a proper psoriasis diagnosis.

Psoriasis in a common condition,  but affected Carenity members had to wait on average three years before getting diagnosed! Itching is the most commonly reported initial symptom.

Nighttime thirst | Pain| Skin Lesions | Mottled Skin| Heart Burn| ScabbingBleeding

All of these symptoms had an effect on patient quality of life. The members' social life and personal life were the most severely impacted by the condition. Severe itching often prevented surveyed members from engaging in any physical or recreation activity.

sociale Social life - 68%

coeur Personal life - 68%

temps libre Free time and physical activity - 56%

boulot Professional life - 44%

famille Family life - 38%

fatigue Chronic fatigue - 25%

douleur Severe physical pain - 25%

 

Even if members reported waiting an average of three years before receiving a diagnosis, their troubles didn't spill over to misdiagnosis: 68% of respondents were not misdiagnosed with another condition before discovering they had psoriasis. Still for the few patients who were misdiagnosed, here are the most common illnesses they were diagnosed for: 

Mycosis| Atopic dermatitis | Keratoderma | Eczema | Dyshidrosis | Dermatitis Seborrheic dermatitis | Irritable bowel syndrome

Patient testimonials: mistaken diagnoses

"The misdiagnoses were spread out over a long time, the doctors I had seen insisted on prescribing ineffective therapies and I became depressed in the meantime."

"I was rather small when the first psoriasis plaques appeared when I was around 8 years old so I don't remember it very well. I know my mother took me to a homoeopath who diagnosed me with an intestinal parasite. I took medicine for about 2 years to get rid of this alleged parasite. I remember that I didn't want to take the medicine, they were pills and I had a hard time getting them down. I remember being a miserable child back then."

"The family GP, who is also a dermatologist, diagnosed me. No immediate impact on me. The trouble started after the diagnosis, because I didn't expect it and because I started to understand how serious it was, since I started doing research, and found out that psoriasis can affect other organs. Then I went into crisis."

"I was very young (11 years old). I don't think I really understood exactly what was happening. It was my parents who were the most worried about it."

Before being diagnosed, 41% of patients did research on the Internet to search on their own for diagnosis and only 30% tried alternative medicine to relieve their symptoms.

écriture

Being diagnosed with a chronic condition can turn a patient's life upside down. Patients had varied reactions to the knowledge that they had a chronic illness: While some were relieved to have a name for their condition and to start treatment, quite a few still felt it was a frightening and brutal moment in their lives. Patients often had mixed reactions to their diagnoses: if some felt the diagnosis was brutal and frightening, others were expecting it and didn't remember feeling any way in particular. 

attente It wasn't a shock, I was expecting it - 26%

rien I don't remember having any reaction - 21%

brutale It was brutal - 21%

souvenir I don't remember - 21%

soulagement It was relief - 20%

horrible It was horrible - 13%

The role of the health professional who delivers the diagnosis is extremely important. Sometimes, a patient didn't feel sufficiently listened to or informed; others are grateful to their physicians for accompanying them in a difficult moment. For Carenity members living with psoriasis, most saw the health care professionals they came into contact with as allies. Patients especially appreciated a calm doctor who took the time to explain the illness to them.

pouce haut

My physician was:

40% - Very calm

37% - Took the time to explain everything for me

19% - Was empathetic

3% - Offered psychological support

pouce bas

18% - Seemed unconcerned

16% - Was cold and distant

15% - Seemed to be in a hurry

12% - Used a lot of hard-to-understand or scientific jargon

Patient testimonials: the moment of diagnosis

"He told me I was suffering from type 2 diabetes and prescribed diet treatment while seeming completely detached."

"Since I was 12 at the time and I had never heard that word, I was terrified. Now, more than 40 years after that day I understand that I wasn't wrong to be scared. The doctor told my mother, after seeing the scabs on my legs, that it was a skin disease which could only be treated, but never cured. He prescribed a tar treatment that he warned could be carcinogenic. You can imagine the impact of all of that on a 12-year-old girl."

"He told me clearly that it was psoriasis and he explained what it was since I hadn't heard of it before."

"He told me it was just psoriasis, then he had me take tests to see if I was allergic to any of the substances I came into contact with at work."

"He told me clearly that I was suffering from psoriasis and that fortunately, it was not very serious, but unfortunately, it was a chronic disease."  

Following the diagnosis, 26% felt like they were ready to fight the illness, 38% felt relieved to finally have a diagnosis and 9% were confident about the future.

23% felt anxious, 31% discouraged, 17% alone, 13% lost, 19% angry. and 12% misunderstood by the people in their lives. 

 

merci Many thanks to all the participants of this survey who took the time to share their experience to help improve psoriasis diagnosis for other patients!

 

"The doctor who diagnosed me with the disease was very professional. You can't demand warmth and empathy from a healthcare professional (at least that's how I see it). But at least I knew exactly what was happening to me."

"They should explain the disease to the patient in more detail. I had to find out everything by myself. And spend more time with the patient, the appointment lasted 5 minutes."

"The dermatologist I saw two years ago was very careful and thorough. He explained everything in detail. He used a lot of technical and scientific terms, but that reassured me because he seemed to be very knowledgeable about what he was saying. To other patients, first of all, be careful about false diagnoses, that happened to me."

"I think they should explain to patients that we can't expect to be 100% healed ... Sometimes I felt like a guinea pig, because nothing really worked and they kept changing treatments."

"It was a relief to find out what the illness was, but I didn't like having to wait so long to see a specialist."

"It was hard for me to accept that there was little I could do to "cure" the disease permanently. Other patients need to be told clearly that it's something they'll just have to live with and that there are drugs and therapies that help a lot. That way they don't fall for all these scammers promising cures in exchange for a lot of money."

 

 

Do the results of this survey line up with your experiences?

Why not share your own experiences with other members in the comments below?

Survey conducted in France, Italy, Spain, Germany, the UK and the USA among 151 Carenity members.

avatar Louise Bollecker

Author: Louise Bollecker, Community Manager France and Content Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a... >> Learn more

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