My blogs are about real people.  These people share their stories in hopes that their experience will help others.  I think with all the stories I hear, and all the people that suffer, this is becoming a humanitarian issue.  We have effective medications available.  Too many people’s lives are being destroyed by this disabling disease.  Medications are only available to a select few.  Even then “Step Therapy” practices by insurance companies, block safer more effective treatments due to costs.
Psoriatic arthritis affects more than 1 million Americans.   Those numbers are staggering.  This disease is under-reported and often misdiagnosed.  PSA is often diagnosed after the onset of psoriasis, but does not necessarily occur in that order.  Joint pain and nail involvement is often a sign you have psoriatic arthritis.   Of course you should be seen by a rheumatologist or your dermatologist, who can evaluate your symptoms and diagnose you properly.

This story is by my friend David Heath.  He has both psoriasis and psoriatic arthritis. Read more about PSA by visiting the National Psoriasis Foundation website and by joining our support group Overcoming Psoriasis . This is an uncut version.

“Hi Todd,

Sorry this has taken a while to get to you but life, holidays, and a 2-year-old boy tends to distract.

Anyway, my psoriasis first started in my scalp when I was around 11 or 12.  This was back in the early 70’s and psoriasis was pretty much unknown especially here in Australia with the amount of sunshine.

My parents, then the doctor, thought it was dandruff aggravated by wearing cricket caps in summer.  Problem was, it got worse in winter.  So I was told to use the usual dandruff shampoos like Celsun and the like.  Except it kept getting worse.  By the time I was 18 it was unbearable.  Another doctor and she diagnosed psoriasis. I was prescribed a coal tar cream and to use T-Gel shampoo.  The coal tar did nothing and T-Gel burnt like hell.

I suffered with this moving to England then back to Australia.  On return to Australia, I eventually found a hairdresser who’s daughter had psoriasis.  Shen recommended trying Sebitar shampoo.  The effects were almost immediate.  This was the mid 90’s.

Just when I thought thing were good, this insidious disease started on my chest and then the back.  This was 1999.  It started spreading across my torso.  Slowly at first.  In 2003 I moved to Johannesburg, South Africa.  It kep getting worse.  In about 2010, I went to a dermatological professor.  He prescribe Methotrexate, Folic Acid, Daivobet, and Dovate creams.  None of it worked.

I was also not told that you should not drink alcohol with MTX (I like wine at dinner).  In any event, after around 18 months, I stopped the MTX because of the expense and the psoriasis was getting worse.

I moved back to Australia in December 2014 and the psoriasis kept spreading.  I was referred to a Dermatologist in the hope of being put on Cosentyx or one of the new biologic agents.  Unfortunately, under the PBS in Australia, you have to fail 2 treatments to qualify for biologic agents.  The failed MTX qualified.  The Dermatologist put me on Neotigarson with a steroid cream and coal tar solution.  He also started me on pUVA.  Almost immediately the Neotigarson side-effects kicked in.  It was only when I looked up the side-effects I learned about the liver and kidney problems.  I stopped taking it immediately.  Also the creams as they were doing nothing.  Fortunately/unfortunately the pUVA is working so I will not qualify for the biologics but is has almost cleared the psoriasis except for the skin discolouration.

With the holidays I have had few pUVA treatments in the last 6 weeks and spots are coming back.  I need to look at the Vitamin D and Probiotic supplements as I cannot rely on pUVA for the rest of my life (though it does help giving a sun tan).

I also have Psoriatic Arthritis and Gout.  Sometimes difficult to tell between the 2 though I am learning.  With the gout I started a food and drink diary to tell the triggers.  It worked well, I have pretty much defined them.  If I start to get a gout attack, I hit it hard with Voltaren tablets.  Usually 200mg in an initial dose knocks it out right away.  If I leave it then it takes a while.

Back to Psoriasis, what I have found is diet makes a difference.  I have tried eating/drinking this and now eating/drinking that for periods of at least 6 months and it makes no difference.  IMO, this thing has a mind of its own.  Sunshine and salt water are the only naturals things that work.  Somewhat confirmed by the pUVA treatments.

So, I am now at the next stage in trying to keep this thing at bay.  I hope that Vitamin D and Probiotics help.  I shall see.

What I have found is there is very little support and knowledge of the disease in Australia.  I feel I want to start some sort of group/organization here but not sure how to go about it.  Any advice would be useful.  I would also like to be able to lobby the governments and regulators here to make medications more accessible and affordable.  To do that, I believe, we need a sizeable number of sufferers here.

Thanks for reading if you have made it this far.

Take care.  Your friend.
Davi.”

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The unconditional love of a parent is tested in my next article.  Many people with good health take it for granted.  We see this time and time again.  It’s unnerving to hear about young adults abusing alcohol or drugs.  If they only knew about the people who struggle each day with illnesses.  Maybe those young adults would make better choices.  Good health is a gift that should be appreciated.  I remember as an adolescent we had a tv commercial that ran explaining, “This is your brain, This is your brain on drugs.”  They showed a frying pan with two sunny side up eggs being cooked.  The message was clear and concise.   As a parent, you hope your children stear clear of drugs and alcohol and take care of themselves. The challenges of being a parent are tested each and every day until your very last breath.

How about when you’re a parent of a child that has a chronic illness like psoriasis?  This inspiring young mom’s daughter developed our disease at a very young age.  I’m sure most of us that are living with this disease can relate with others who have the disease,  but how about a parent? I know personally one of the reasons why I raise awareness is the fear that my children might some day be diagnosed with psoriasis and psoriatic arthritis.  This is my greatest motivation to help the National Psoriasis Foundation find a cure.  My next guest explains her unwavering love for her daughter with psoriasis and her quest to clear her.

Roberta Bellatreccia is from Italy and this is her story in her own words.  She is a member of our support group Overcoming Psoriasis :

“Hi Todd, these are my 3 paragraphes.
Maybe my English is a bit rusty.

If I had to describe the relationship I have with my daughter’s psoriasis in 3 paragraphes, I would entitle them: awareness, “debut”, friendship.

AWARENESS
My daughter was diagnosed psoriasis at the age of 8. When she was 10 her skin was 100% covered, she lived many months of her life like an amphibious, hours in the bathtub with oil and warm water to have relief from the itch. In that period I often used to give her liquid food to avoid her cheek skin to rip while chewing solid food. I read so many documents, checked so many links, spoke to so many doctors, observed so many forums. In the meanwhile I washed so many blankets, hoovered so many floor square meters, changed so many pillowcases, sang so many sweet songs in the night, told so many funny stories, massaged so many harmful centimetres of a red itchy/scaly/loved skin, created so many new games and stories with dolls, food, plasticine, colours. An entire summer, an entire autumn and half of a winter together with my little, curly, frightened, wild ten years fighter. And during the following years, during her hard periods, my daughter’s behaviour “taught me” how to behave, what to say and, sometimes, when to keep in silence.
Our entire family “has got psoriasis”.
My daughter, my son, my husband, our dog. And me. The entire family has the strength to face it.
“Ohana”, as Lilo said! (Cit. “Lilo and Stitch”)

DEBUT
I sai my daughter was wild, to my eyes, because in spite of her skin, she never renounced to have a walk, or to go shopping looking for wooden or metal materials for her lovely creations, to have an ice cream or to buy food to cook with her family. Every exit was a “debut”: She had all the eyes on her skin. But sometimes they were “magic” eyes. Once, in a supermarket, a security guard stopped us. I was ready to arguments but this very big man knelt down to my daughter face, touched her arms, and asked her: “It is psoriasis, isn’t it? Can you see how big and handsome I am now? When I was your age my skin was like yours today. Never forget you are lovely, and you will be a gorgeous woman, and if anybody bothers you here, please, call me, today I’ll bee your body guard.”.
So many years ago, and I still cry when I tell or write this episode.

FRIENDSHIP
I certainly know I can’t defeat psoriasis. But I certainly can improve my daughter’s quality of life. We met some horrible people, but we met soooooo many lovely human beings, We have now some good friends among doctors, but also among people who supported Camilla during her quarrel with her skin. I said “quarrel”, because it is the term she used once to describe her psoriasis. Once, when she was 10, I asked her how she could describe her psoriasis. She said: “To me psoriasis is like Daniele (her lovely, sometimes/spiteful brother): we quarrel, we fight, but he is not at all always the winner. I sometimes win. I know he is my family, I can manage it.”.
Today my daughter is a lovely, 18 years old woman.
She still fights with psoriasis, and sometimes she feels she is winning.
To me, she wins every day.
Her problem has become her resource”.

Thank you Roberta for sharing your story about your lovely daughter.  Your love for her is resounding.  I know how difficult it is being a parent.  I’m sure this situation doesn’t make things easier.  Very powerful and inspiring story.  I pray that we celebrate the cure announcement together.

People who suffer with the visible skin disease psoriasis often feel invisible in society. Imagine being asked to leave a public pool because of your visible plaque psoriasis. What long term effect will this situation have on that particular individual?

Because psoriasis is visible, it is often perceived to be contagious. In fact, that’s the misconception I spend most of my time explaining to the general public. Psoriasis is not contagious and it’s not just a skin disease. The visual red flakey blotches on the surface are just a symptom of the inflammation happening underneath. In a recent study, it revealed this skin disease can cause heart disease, cancer, arthritis, and depression if left untreated.

Pharmaceutical companies have been working feverishly to develop new treatments. Many doctors and patients are not comfortable trying some of these new medications. Moderate to severe patients could be doing more harm than good without drug intervention. Patients need to be their own advocates and educate themselves to make a informed decision. The most reliable source of information these days is the National Psoriasis Foundation .

Models strive to be perfect for the camera lens. One runway model that won’t let her skin disease deter her from being photographed is Joleen Obie Trail. Joleen was diagnosed at 18 with a mild case of psoriasis appearing on her elbows and knees. She was able to continue her career in modeling by having the make-up artist cover her spots. Later on in her career, at the age of 32, her psoriasis became severe because she “caught a serious cold from a very stressful situation” causing her to flare.  She also had a run-in with IBS (Irritable Bowel Syndrome) so she had to avoid foods with gluten.

I asked Joleen, “What are you doing to help your psoriasis?”

She responded, “I try to avoid nightshades. I only had tomatoes twice this year. I reckon that helped. I avoid eggplant and peppers. I will occasionally have potatoes. I try and follow the Dr. Pagano’s Diet. I use Dovobet, but only on my elbows and just tar and coconut oil on my legs. The Pagano Diet is so strict and difficult to follow. I like the concept of his diet and I eat brown rice instead of white rice. Spelt pasta instead of wheat. I do things that I like that make my body happy, such as yoga, swimming, and walking!

Next I asked, “What advice would you like to share with other psoriasis patients?”

Joleen: I think the most important thing is to be proactive as soon as possible. I encourage others to buy the book Dr Pagano’s, “Healing Psoriasis.”  Join a support group and educate yourself about psoriasis.  Magnesium baths with lavender oil are wonderful and soothing. I’ve used acupuncture and Chinese herbs. Oregano oil and a good foundation to cover it when needed! Just stay on top of it and don’t let it get the best of you. Life is meant to be enjoyed!

I travel the world as a model and always strive to be my best. My psoriasis has taught me to lead a much more peaceful life now! I am content with where I live. I don’t have any plans to change. I am happy with the simple things like good healthy yummy food and taking my dog to the beach. I adore gardening and lying in the sunshine. Nature inspires me and my gorgeous man who loves and supports me!

Joleen is an advocate for models all around the world. She is changing the industry standards. She says, “Healthy women and healthy models.” New laws are being implemented to protect models from becoming bulimic or anorexic. These laws will require models to have a certain BMI (Body Mass Index). Models will be required to carry doctor’s certificates, reporting their healthy status. It’s extremely unhealthy and unrealistic for woman to be portrayed in this light.

Joleen now resides in Australia. The sun is known to help slow down the replication of skin cells of psoriasis, which is reproducing cells ten times faster than normal. Joleen is an active member of our support group Overcoming Psoriasis .

Article written by Todd Bello

*Resources; National Psoriasis Foundation

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