Family planning involves preparing for or preventing having children. This means thinking about birth control, fertility and pregnancy. It is important for all women, whether you want a family, do not want a family, or are not sure. As pregnancies are not always planned,¹ it is good to know the right information, even if you do not want a family.

Family planning is important for women of childbearing age, particularly for those with psoriasis.¹ You may have questions about how your psoriasis could affect your family planning. This could include any impact on your fertility, pregnancy and breastfeeding.

Some women feel they have to choose between pregnancy and taking their psoriasis treatment – they might even stop treatment without speaking with their dermatologist (skin specialist).² But you do not necessarily need to choose! There are treatments suitable during pregnancy and breastfeeding that can help you control your psoriasis.^1,3

Pregnancy is possible in psoriasis!

Psoriasis presents as inflammation of the skin.^1,4 Controlling this inflammation is important before and during pregnancy, as it can lead to better outcomes for you and your baby.^1,3 Some treatments can transfer to your baby,¹ so it is important to understand which treatments are less likely to transfer to your baby during pregnancy or breastfeeding.  

If needed, your dermatologist can help you choose a treatment that is pregnancy-compatible.^1,2 It is important to talk to your dermatologist about this early, so they can give you all the information you need to understand the available treatments. Do not worry if you are unsure about your plans for a family, or if your plans change. It is still important to keep talking to your doctor about any possible changes.

Your dermatologist can help you select a treatment that will treat you and not your baby

Experts have written guidelines to help dermatologists give you advice about your psoriasis treatment. These guidelines consider the evidence for treatment use before, during and after pregnancy. They are written for doctors, but they are available to the public if you want to know more.

Together, you and your dermatologist can talk about the best treatment option for you, as well as your fears or concerns around your special journey. Together, you can make a shared decision on the most suitable plan for you and your baby.⁵

Key points to remember:

References

1. Gottlieb AB, Ryan C, Murase JE. Clinical Considerations for the Management of Psoriasis in Women. Int J Womens Dermatol. 2019;5(3):141–150.
2. De Simone C, Calabrese L, Balato A, Cannavò SP, Dattola A, Esposito M et al. Psoriasis and its management in women of childbearing age: tools to increase awareness in dermatologists and patients. G Ital Dermatol Venereol. 2020;155(4):434–440.
3. Allen KD, Kiefer MK, Butnariu M, Afzali A. Pregnant Women With Immune Mediated Inflammatory Diseases Who Discontinue Biologics Have Higher Rates of Disease Flare. Arch Gynecol Obstet. 2022;306(6):1929–1937.
4. Lam M, Steen J, Lu JD and Vender R. The incidence and prevalence of uveitis in psoriasis: a systematic review and meta-analysis. J Cutan Med Surg. 2020;24(6):601–607.
5. Morrison T, Johnson J, Baghoomian W, Hamilton A, Simpson E, Greiling T et al. Shared Decision-Making in Dermatology: A Scoping Review. JAMA Dermatol.
   2021;157(3):330–337. 

This article was developed and funded by UCB.

Date of preparation: July 2023

EU-N-DA-PSO-2300040

© UCB Biopharma SRL, 2023. All rights reserved.

A ground-breaking project co-implemented by ‘Epidermia’

In a trailblazing study- spearheaded by ‘Epidermia’ (Panhellenic Association of Patients with Psoriasis and Psoriatic Arthritis), in collaboration with ‘National and Kapodistrian University of Athens’ and the health economics consulting company ‘Econcare’ – a survey was conducted in March-April 2021 in Greece, to investigate the quality of life of patients with moderate to severe psoriasis and the factors that may influence this. The study looked into the needs of patients, asked whether these are met by the relevant systems of health and social care provision, and identified the gaps, unmet needs and areas for improvement associated with of the quality of life of patients with psoriatic disease.

This study is an optimistic step towards patients’ voices, being part of scientific research approaches to progress the field of treatment and better quality of life.

The results of the study were published in October 2022 in the prestigious ‘Italian Journal of Dermatology and Venerology’ (Edizoni Minerva Medica), entitled Patients’ satisfaction, unmet needs, and treatment benefits in moderate to severe psoriasis in Greece: results from a cross-sectional survey.

The President and the Treasurer of Epidermia (Renos Vamvakousis and Tina Koukopoulou respectively) participated in the formulation of the project and writing the scientific paper, with the cooperation of Georgia Kourlabas and Garifalia Stefanou from Econcare and the esteemed contribution of Professor Ioannis Ifantopoulos, of the National and Kapodistrian University of Athens.

The study involved 380 patients – all members of ‘Epidermia’ of whom 314 have moderate to severe psoriasis.

The article analyzes the profile of the participants (patients with psoriasis), the types of treatment they are undergoing, and the duration of time from the onset of the disease until its correct diagnosis. The study gave a voice to patients to express their needs not only with regard to their treatment for psoriasis, but also with reference to how their condition affects their quality of life and what areas of needs are unmet. These are presented in the article, along with the opinions of the patients about the benefits and their satisfaction with the treatment regimens they follow. In addition, the impact of the disease on the daily life of the participants is recorded as well as the rate of patients’ compliance with their treatment.

 Epidermia is grateful for the fruitful cooperation of all the researchers and scientists involved, and continues to work to have patients’ voices included at all stages of medical research, and treatment for dermatological conditions.

For the complete article, please follow the link here. 

Motivating young patients to exit their comfort zone and become patient advocates

Same as in any other therapeutic area, involving young people in PsO/ PsA advocacy and campaigning is essential to building a more diverse and inclusive movement that reflects the needs and concerns of all stakeholders. By providing opportunities for young people to engage, lead, and learn, we can ensure that the next generation of advocates and leaders is well-prepared to continue the fight for important causes in the future.

As the first step towards empowering future young patient advocates, EUROPSO organised a Young Round Table (YRT) past weekend, on April 1, 2023 in Brussels, Belgium.

Immediately after this workshop meeting, we spoke with Jan Koren, the President of EUROPSO, about models to get young people involved in advocacy and campaigning.

„If I wanted to summarise the most important models for involving young people, I would definitely shortlist it to: Youth Advisory Councils, Peer-to-Peer Advocacy, Youth-Led Campaigns, Mentorship Programs, and, inevitably at these times, Digital Campaigns“ says Koren.

Establishing youth advisory councils would allow young people to provide input and feedback on advocacy and campaigning efforts can help ensure that their voices are heard and their perspectives are valued.

As for the peer support, encouraging young people to advocate for causes they care about within their own peer groups, such as through social media or school-based campaigns, can help build momentum and engagement.

According to Maria Helena Guia, a young patient advocate from Portugal and attendee of EUROPSO’s workshop, “The sharing of people from different countries is very enriching and expands everyone’s vision. Participants were left with lights on how to create an advocacy plan, a tool that could be quite useful. There are young people with a lot of desire to make a difference, but they have to be motivated not to stop. It is important that the organization be more assertive about the expectations of the meetings.”

Empowering young people to take the lead on advocacy and campaigning efforts, such as through youth-led lobbying for policy changes can help build a sense of ownership and investment in the cause. “Mental health and psoriasis, social media or internet in general“ are the subjects another participant of this year’s YRT, Luna Fernandez from Spain would like to see in workshops at the Annual Members Meeting in November this year. According to her, three new key learnings from this workshop are: „1. Very different experiences in different countries; 2. Despite this, very similar preoccupations in us, young patients, and 3) New knowledge in organisation governance.“

Since young people naturally lack life experience, pairing them with experienced advocates and campaigners through mentorship programs can help build skills and provide opportunities for growth and development.

Finally, leveraging digital platforms and tools, such as social media or online petitions, can help young people engage in advocacy and campaigning efforts on a global scale and reach a wider audience.

„We plan to do everything we can, as EUROPSO, to establish these models in the next couple of years. Our first step was to hold this YRT workshop in Brussels last weekend and make basis for establishing a YoungEuropso Committee. However, there are many obstacles that make these aforementioned models hard to realise and addressing these obstacles requires a concerted effort by healthcare organisations, patient advocacy groups, and policymakers to create inclusive and supportive environments that empower young patient advocates to make an impact and advance in their careers“ concluded Koren.

Fall and winter bring shorter days. Shorter days mean less sunlight and Vitamin D. At the same time, colder temperatures mean more clothing layers covering your skin. When combined, these factors might bring the worsening of psoriasis symptoms.

In this period of year, we naturally tend to spend more time in closed spaces and due to the heating, the air in these spaces sometimes gets really dry. On the other side, dry wither air in Europe is not exactly favourable for psoriasis either. In fact, the lack of humidity in the air outside and the dry heat in most buildings during fall and winter can have the same undesired effect on your skin- depriving it of the moisture it needs. If you take this into account and combine it with the fact that your body is in this period usually covered from head to toe and not getting enough ultraviolet light, it becomes understandable why your skin is more likely to flare and your plaques worsen in winter.

Keeping skin soft and moist can minimize itching and tenderness. Over-the-counter moisturizers such as petroleum jelly or thick creams may be recommended. These should be applied immediately after bathing or showering.

The dryness-related psoriasis symptoms could also be relieved with the help of air humidifier in the space where you spend the most of your day, be it an office or your home. However, safely getting the ultraviolet light your skin needs might not be that easy. The UV tanning is definitely not an option for various reasons, among which the risk of getting melanoma takes the highest place.

In the attempt to compensate the sunlight, your doctor might recommend medical use of light rays to treat psoriasis. This is known as phototherapy[i]. This therapy comes in a variety of options, and can be done in a doctor’s office, psoriasis clinic, or even in your home.

The form of light known as ultraviolet light B (UVB) seems to be the most beneficial for treating psoriasis. Depending on your symptoms you might be prescribed a certain amount of UVB exposure. If your doctor does choose this form of light therapy for your psoriasis, ask whether you should consider purchasing a home UVB unit.

Holiday season and psoriasis

Winter is also time for holidays. Some people get psoriatic flares around holidays but, contrary to some beliefs, the key triggers[ii] for symptoms are not food and alcohol. The experts have established that the main reason behind  worsening of symptoms for winter holidays lays in stress. It is known that stress is a psoriasis trigger, and there are people who find the holidays very stressful. In addition to that, heavy drinking, smoking and exchanging viruses at social gatherings may also increase the psoriasis symptoms.

What should I do to help myself then?

We have asked Primarius M.Sc Pij Bogomir Marko, MD from Slovenia for an advice.

„All of the previously mentioned reasons might make your life with psoriasis more difficult in wintertime. My first recommendation is- adhere to your therapy. If you are prescribed a medication for psoriasis, make sure that you are compliant and you take your medicine on time. The other advice is- if you feel stressed out, find something that helps you relax. And finally, even though the wither food is delicious and you don’t feel like exercising, try to follow as healthy a lifestyle as possible. Let that be your Christmas present to yourself. “

About psoriasis

Psoriasis is an immune-mediated disease[iii] that causes raised, red, scaly patches to appear on the skin. It typically affects the outside of the elbows, knees or scalp, though it can appear on any location.

Some people report that psoriasis is itchy, burns and stings. Psoriasis is associated with other serious health conditions, such as diabetes, heart disease and depression.

Between 10 and 30% of people with psoriasis develop arthritis, and it can occur at any time, although it is most likely to appear between the ages of 30 and 50. It is not possible to know who will suffer from psoriatic arthritis, as there are no blood tests to predict it. Psoriatic arthritis is a form of chronic inflammation of the joints characterised by redness, swelling and pain in the affected joints.

In addition, there is a rare form of psoriatic disease, called Generalized Pustular Psoriasis (GPP), which is both physically and genetically different from Plaque Psoriasis. Pustules often cover large areas of the body and typically presents with fever, shivers, intense itching, a rapid pulse, fatigue, headache, nausea, muscle weakness, and joint pain. Flares can also cause life-threatening complications, such as a sudden drop in blood pressure.

[i] American Academy of Dermatology Association, https://www.aad.org/public/diseases/psoriasis/treatment/medications/phototherapy

[ii] WebMD, https://www.webmd.com/skin-problems-and-treatments/psoriasis/7-psoriasis-triggers

[iii] National library of medicine, Psoriasis as an Immune-Mediated and Inflammatory Systemic Disease: From Pathophysiology to Novel Therapeutic Approaches, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8615182/

No person suffering from psoriasis or psoriatic arthritis should be left alone with their worries.

This was the reason for the registered association Revenium to organise a Polka Dot Day on the occasion of World Psoriasis Day, October 29, 2022.

„We were delighted that so many people joined us in support of psoriasis patients by wearing polka dot clothes or accessories on this day. By taking action, we are letting our surroundings know that we are familiar with the facts about the disease and that we care about these people“, said the organiser of the event, a nurse and a member of the SPAE patient organization committee, Gabriela Doleželová.

The purpose of this event was to inform the public on the nature of this chronic inflammatory autoimmune disease, which affects the whole organism. It aimed to spread awareness about the disease which shows symptoms on the skin, but also affects nails and joints (psoriatic disease).

It is very important that the public knows that psoriasis is NOT CONTAGIOUS, and that it can be treated, even though it cannot be fully cured at this time.

A special family of polka-dotted toy figures were invented and produced for this day, with purpose of educating children on the subject of psoriasis. These figures are conveying message that psoriatic disease is not contageous and that those who suffer from psoriasis still belong in their group of friends, just like anyone else.

29 October was the day to celebrate Polka Dot Day. On city and village squares, playgrounds and schoolyards, people joined hands and created one BIG HUMAN POLKA DOT – a circle of us, people with polka dots.

„Basically, it´s just about putting on any polka dot clothes on the given day and by doing that, showing that we´re familiar with basic facts about psoriasis,“ said Hana Potměšilová, Chairwoman of the Board of Directors of the non-profit organisation Revenium, Polish member of EUROPSO.

For more information, please visit:

• Polkadotday.com
• Inspirante.cz
• Revenium.cz