August Is National Psoriasis Awareness Month!

While we have covered psoriasis in previously published articles, we have not covered this incurable autoimmune disease during a pandemic.

We have all made crucial decisions regarding our health during the virus.

Some have chosen to not follow-up on their necessary visits and elective procedures. 

For psoriasis and psoriatic arthritis patients, ongoing treatment is necessary for many of us to control active symptoms. 

If you are a psoriasis patient and on a biologic, the big question is whether or not continuing use of your biologic helps or hurts you during a pandemic? The concern is very real due to the fact that biologics directly impact your immune system.

The National Psoriasis Foundation (NPF) was founded March 14, 1967. They are the largest non-profit organization for psoriasis and psoriatic arthritis patients. The progress made by this organization in trying to find a cure has been nothing short of remarkable, as I have been following them since I was a very young child with the assistance of my parents.

To help their members in this pandemic, the NPF has formed a task force to serve its members with information, guidance regarding treatment, and even providing mentors when necessary to help their members live with this incurable disease. 

Their community is a constant and reliable source of information for those struggling with psoriasis, and all that entails. 

It should be noted that the NPF recently issued this statement:

“At this time, the NPF Covid-19 Task Force does not recommend that patients stop their biologic or oral therapies for psoriasis and/or psoriatic arthritis”.

Do not make this decision on your own. Always discuss continuation or discontinuation of treatments with your dermatologist or treating physician.

As with any medication, immediate cessation has the potential to cause undesired side effects and possible withdrawal symptoms.  

Many factors and individual considerations such as past medical history, lifestyle, age and other criteria should be brought into the equation before major decisions are made.

For those of us that have been dealing and living with the consequences of psoriasis and psoriatic arthritis, we already know to be careful of everything we consume and utilize in our daily lives. Many of us have learned the effects/repercussions of not continually performing maintenance for our condition.

I feel for the newly diagnosed patients that are uncertain what the right path should be during these unprecedented times.

You have to remember that this disease is exacerbated by stress. This holds true during normal everyday life, but especially now.  Maintaining our health status, and eating and sleeping right will go a long way toward trying to keep our immune systems from further declining.

Sadly, many people with psoriasis/psoriatic arthritis are experiencing flare-ups during this pandemic. Some are foregoing treatment out of fear and in many cases, worse flare-ups and longer healing times/clearances are occurring.

Remember that left untreated, this disease not only impacts physical health, but emotional health as well.

For those with psoriatic arthritis, permanent joint damage and disability can result if left untreated.

Having lived with psoriasis, psoriatic arthritis and Koebner Phenomenon for well over 30 years, it is so important to educate people about this disease.

Many people do not understand that psoriasis is NOT CONTAGIOUS! I can personally attest to the complications and self-esteem issues associated with living with this disease.  Unfortunately, there are so many more options available today than when I was a young child.  The stigma of psoriasis still affects many psoriasis patients. 

The impact is far reaching, having to spend time worrying about finding clothing for work and activities, relationships, home remedies, and cost of non-covered treatments. Continually having to educate people about your visible lesions is a never-ending battle. 

Groups such as the NPF and Personalized Cause spend inordinate amounts of time and resources to increase awareness, as well as promoting research and various treatment options.

It took most of my lifetime, but I see the strides and results from the hard work and increased awareness to make living with psoriasis a little less daunting.

I have been the “go to person” among family, business associates and friends when diagnosed with psoriasis. Over the years, networking together have enabled us to cope and keep abreast of the newest treatments and research into this autoimmune disease.

Determining the right path of treatment is no easy task particularly, with some of the criteria required for certain trials and available drugs. The side effects attached to various treatments or studies were difficult to endure. If a trial drug used a placebo and I received it, I had to go through a longer flare-up and healing process because I was not a patient that could go the allotted time period without any formal treatment. 

I urge you to research both short and long-term consequences of any treatment protocol you and your treating physician discuss. 

Remember that a quick or rash decision because you want clear skin may impact the rest of your life. As it did mine. 

I had to make decisions at a very young age that caused permanent damage. I do not want anyone to live with the regrets that I had to live with. Particularly, long-term. I encourage you to inform yourself before making any decisions, as well as in-depth discussion with your healthcare provider about your current lifestyle, work, restrictions, future plans (children), etc.

I would like to close by telling you that what works for one person may not necessarily work for another. Devising a tailored plan takes time, energy, maintenance, and a motivated healthcare provider. 

Here are the links to our previously published articles on psoriasis/psoriatic arthritis: