WORLD PSORIASIS DAY 29 OCTOBER 2017

World Psoriasis Day is a global annual awareness day specially dedicated to people with psoriasis and psoriatic arthritis. Conceived by patients for patients, #WPD is a truly worldwide event that sets out to give an international voice to the more than 125 million people with psoriasis/psoriatic arthritis around the world. Formed by a global consortium of patient associations from around the world (the International Federation of Psoriasis Associations or IFPA), World Psoriasis Day aims to raise the profile of a condition that needs to be taken more seriously by national and international authorities.

Aims of World Psoriasis Day

Every day, people with psoriasis face immense barriers in society, including in the health care system, at work, in school and in social interactions. Through World Psoriasis Day, we hope to encourage our supporters to take part by pledging to do one or more of the following:

FIGHT prejudice, stigmatization and discrimination
RAISE awareness, understanding and hope
GAIN access to proper diagnosis, treatment and improved quality of life 

WPD-poster-768x365.png

The theme for World Psoriasis Day 2017 is “Psoriasis Inside Out” and it is all about showing all aspects of the disease and to give a face to pso/psa and to share stories. For that reason, IFPA and its members in 56 countries are organising awareness-raising and advocacy campaigns to improve access to treatment, increase understanding and build unity among the psoriasis community.

Psoriasis Myths and Misconceptions

Unlike other ailments, psoriasis can be seen on the skin and often people guess at what is wrong. They wonder if the lesions might be contagious, which they are not, or that the person who has psoriasis is unclean, overly nervous or high-strung, which they may be, but that is not the reason they have psoriasis.

Sometimes they may believe the person who has the skin disorder did something to cause psoriasis to appear; but that, too, is also false.

Psoriasis is a disorder stemming from a physical defect just like other disorders, such as arthritis, asthma,  diabetes or nearsightedness. It is very important to educate the public about psoriasis and not allow myths to spread.

Common myths about psoriasis:

Myth: “Psoriasis is contagious.”

Fact: Psoriasis, especially in moderate or severe forms, is highly visible. Because of the abnormal growth of skin cells, thick red scaly inflamed patches of skin appear. However, psoriasis is not contagious. You can’t ‘catch’ the disease from another person and you can’t pass it on to someone else by touching them or having close contact. Actually, psoriasis is as contagious as freckles!

Myth: “Psoriasis is just a skin disease. A cosmetic problem.”

Fact: Psoriasis is chronic disease of the immune system that causes the abnormal growth of skin cells. While a normal skin cell matures in 28 to 30 days and is shed from the skin’s surface unnoticed, a psoriatic skin cell takes only 3 to 4 days to mature and move to the surface, resulting in cells piling up and forming the scaly lesions. Psoriasis lesions can be painful and itchy, and they can crack and bleed.
About 30 – 50% of all people with psoriasis also develop psoriasis arthritis which causes pain, stiffness and swelling in and around the joints.
Skin inflammation in psoriasis is just the tip of the iceberg – there is increasing evidence suggesting links with serious health concerns such as cardiovascular disease, diabetes, liver disease, depression and obesity

Myth: “Psoriasis only affects patients physically.”

Fact: Aside from the physical burden of the disease, there is also a significant psychological and emotional impact experienced by psoriasis sufferers. People with psoriasis often report feelings of helplessness, hopelessness, anger, frustration and even depression related to the appearance of their skin and how others react to their condition. Some patients with severe psoriasis have even experienced thoughts of
suicide. Many individuals react to their condition by wearing concealing clothing, curtailing everyday activities such as swimming or going to the gym if it means they will attract stares or negative comments. Psoriasis sufferers often compare the dysfunction and disability of the condition to that experienced by people with other chronic conditions such as diabetes or heart disease.

Myth: “Psoriasis is caused by poor hygiene.”

Fact: Psoriasis is a disease of the immune system and has nothing to do with poor hygiene. Triggers that can influence the course of psoriasis include infections, stress or worry, hormonal changes, injury to the skin, alcohol, obesity, poor diet, and certain medications.

Myth: “Psoriasis can be cured”

Fact: Psoriasis is a chronic, life-long disease. There is no known cure yet, but with new options and improved existing treatments, people have a wide variety of ways to help manage the symptoms of psoriasis. Until a cure for psoriasis is found, pharmaceutical research continues to hold the best hope for increasingly more effective therapies leading to better overall management of psoriasis. Research into the immune system has led to the development of new biological drugs that target the underlying causes of the
condition.

Myth: “Psoriasis is easily diagnosed.”

Fact: Many conditions affecting the skin look alike, for example some early symptoms of psoriasis, such as itching and redness, look the same as eczema or atopic dermatitis. This can sometimes make the disease difficult to diagnose. It’s important to see a doctor who can do the necessary tests to make a proper diagnosis.

Myth: “Psoriasis cannot be inherited.”

Fact: While many patients with no family history develop psoriasis, there is a genetic link in approximately 40 – 60% of patients with the condition. Numerous studies point to a genetic predisposition, or inherited tendency, for these patients to develop psoriasis. Having the genetic predisposition, however, doesn’t necessarily mean that an individual will develop the disease. Other contributing factors, such as injury or infection, may act in conjunction with several genes, or specific patterns of genes, to set in motion the chain of events resulting in psoriasis.

Borchure-Myths-and-misconceptions-about-psoriasis

ADHD AWARENESS MONTH OCTOBER 2017

ADHD (attention-deficit/hyperactivity disorder) awareness is celebrated every October, with events and activities happening all across the country and now, around the world, on the ground and on the Internet, capturing the notice of numerous national, regional and local media outlets resulting in articles, interviews and feature stories.

ADHD Awareness Month is an international movement to educate the public and create greater awareness and understanding about attention deficit disorder. “Our goal is to help women and men learn the facts about this disorder and to dispel myths which keep people affected by ADHD from seeking appropriate treatment,” said (or replace with quote by someone at your business/practice, with speaker’s name, title, practice name.)

October is ADHD Awareness Month. Attention-Deficit/Hyperactivity Disorder (ADHD) affects children, adolescents, and adults in the United States. Did you know…

  • Millions of people in the United States are affected by ADHD
  • Nearly 9 % of children ages 3-17 have been diagnosed with ADHD
  • About 4.5% of adults have been diagnosed with the disorder

ADHD’s core symptoms include problems with attention, impulsivity, and hyperactivity.

This year’s theme for ADHD Awareness Month is “The Many Faces of ADHD.” An ADHD diagnosis not only challenges affected individuals but also their families and friends.

That’s why we have joined the movement to raise awareness about the condition.

Consider these facts:

  • Individuals with ADHD experience more challenges in school, at work, and in social relationships.
  • They have higher rates of emergency room visits and automobile accidents, are at greater risk for substance abuse.

The good news is that when children, teens, and adults are diagnosed early and receive treatment, they can lead more fulfilling lives.

I hope you will visit the ADHD Awareness Month coalition’s website at ADHDAwarenessMonth.org, to learn more about this real and serious health condition. The website has a wealth of information to help affected individuals, and their families, cope with the daily challenges of life. While you’re there, click on the calendar of free events and activities that are being held across the country in honor of ADHD Awareness Month.

Useful Documents:

An Introduction to Fibromyalgia and how it started affecting me pre-diagnosis

My name is June, I am 46 and I live in the North East of Scotland with my husband Paul.  I was diagnosed with Fibromyalgia at the age of 37 after a few months of tests and discussions with my Doctor at the time.  Looking back I think I started suffering the effects of Fibromyalgia as early as 12 years old but at the time it was put down as growing pains.  I have many memories of struggling to do things in my teenage years and feeling constantly exhausted but I just assumed this was me growing up and that becoming an adult was a tiring job.

Fibromyalgia, for those that don’t know anything about it is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most. And the fatigue can go from feeling tired to feeling exhausted and feeling flu-like.  It feels like someone has pulled the plug or the person hasn’t managed to recharge their batteries and all energy has been used up.

Fibromyalgia Syndrome is a collection of symptoms and you may have only a few of them or most or them or somewhere in between.

My personal journey with Fibromyalgia has had many ups and downs and a lot of learning curves to cope with as well as many life changes. I have gone from a pretty healthy woman in her 30’s who loved life and loved her job in social care and worked hard at it to a woman in her 40’s who is constantly exhausted, in severe pain 24/7 and has to use mobility aids to get around and had to give up work in February 2016 at the age of 45.  Looking back this wasn’t what I had planned for my personal journey through life but when you are thrown a few curve balls you adapt and change to accommodate them.

I became very ill whilst working as a pupil support assistant at a special needs school in Aberdeen and found that I started suffering from migraines on a near daily basis.  That and finding when I got out of bed in the morning that I couldn’t walk with my feet flat on the ground as it felt like my tendons had tightened overnight so I had to tiptoe around.  Then after a frightening episode in the car when my eyesight went funny and I nearly crashed my car on the way to work, I decided to seek medical treatment.  Previous to this I had had some periods of sick leave from the job I had with a local council and this was put down to depression.  I thought though at the time it was more than that as I was in constant pain and I found that my memory was affected and whenever I returned from sick leave I felt like I had to start again from scratch as though I was new at my job. So I knew something wasn’t quite right and that I needed to explore further.

A trip to the Doctors in early 2008 lead me to explain my symptoms in detail and I was adamant that it wasn’t just depression that I had.  It was a different Doctor I saw that day and she listened and then went and printed off an article on Fibromyalgia and said take this home and read it and then come back in a week.  I read the article as soon as I got home and everything in it described me and how I was feeling at the time.  I had finally found out what was wrong with me and now that I did, I could work out how to manage it.

 

 

 

 

PCOS: My story – our IVF journey

Since February 2016 we have been up and down the emotional roller-coaster that is life. We have slowly come to terms with infertility but that still doesn’t mean it hurts any less. I still feel utterly useless as a woman.

Between February and November 2016 we had to attend the hospital for multiple meetings and tests. Most of the meetings were pointless exercises of reviewing the paperwork which was posted to us for completion.  In the June we were given a start date for October but it was literally too short notice especially as they wanted us to attend an appointment 3 days after the letter was issued which was actually a date we were on holiday.

Finally, on Tuesday 25th November we attended what we thought was the start of the process hospital appointment. Unfortunately, for us our consultant was running an hour and a half behind schedule. The weather outside was dreadful so we were left with no option but to sit in the waiting room. Thankfully the TV was on just a shame it was something to do with buying rubbish from other people and trying to sell it for a profit at auction. Ah well I suppose one mans rubbish is another’s treasure…

Anyway after a long stressful wait that seemed like an eternity we finally met our consultant for the IVF. When you’ve had your first IVF clinic appointment you would have left feeling deflated and a bag full of more paperwork. Honestly after an hour a half wait to be told by the consultant you’ve been accepted for IVF was both happy and sad news. After that hour and a half we started inventing snippets of what we thought our meeting would go like. We thought we would leave with some dates to not on the calendar and know exactly what was happening.

So what did our appointment go like I hear you ask. Well we were escorted into the consultants office where we took a seat. We were presented with lots of paperwork and told that we would be asked questions that we have already answered. The responses were typed into the computer. After half an hour of going through the same questions and answers about past medical procedures, periods etc we were told yes you are eligible for IVF. The consultant then went through more paperwork telling us the procedure we would go through (a very short summary) anti-sickness tablets, daily injections, scans, small operation procedures etc. Once again we left the hospital with a bag of paperwork and anxiety. The only difference this time was a prescription for the contraceptive pill.

January 2017, nearly a year after been told I couldn’t have children I was now sat at the IVF clinic upstairs in James Cook University Hospital. I had been taking the contraceptive pill for nearly 2 months (seems a bit weird taking anti-baby meds to have a baby). Apparently this is to help control your natural cycle or in my case control an artificial version of it.

I had seen a lovely nurse and been given quite a lot of information to absorb between now and February including a bag full of bizarre named medication and lots and lots of needles plus a sharps bin. It looks like I am finally starting the IVF journey.

 IVF: the journey so far (weeks one, two and three)

It was Wednesday 22nd February. I had officially been using Menopur for the past 18 nights and Cetrotide for 4 mornings. I was taking 2 powder vials of Menopur to one solution for the first 7 days and then onto 4 powders to one solution.

On Monday 20th I went for a scan to see how things were progressing and the follicles were still quite small. So I was asked to continue the Menopur and have another scan and blood tests on the Wednesday. Well Monday morning driving back from the hospital was a rather emotional affair. For some unknown reason the tears started to roll down my face stinging my eyes. I just felt utterly useless as a woman. I just kept repeating the nurses words over in my head and para-phrasing the bits my downside wanted to hear. What the nurse actually said;  “Looks like we’re a week behind. The follicles are not big enough yet so we need to keep you on the Menopur a bit longer. We will see how it goes on Wednesday and make a decision then” versus what my head heard “you’re useless and your body doesn’t work give up and go home stop wasting everyone’s time”.

I woke up  on the Wednesday feeling a little hopeful and in high spirits. I got to the hospital early for my bloods had a lovely chat with Alison about all things Beagle related. Popped down to the x-ray department for scan number 3, again all went well. Heard the numbers and thought oh these have grown a lot since Monday. 21, 17, 16 then there was a few 14, 12, 10. Feeling a little better than Monday I leapt through the corridor back to reproductive medicine. Sat my ass on the seat in the waiting room waiting to see the nurse. My name was called whoop lets put the game face on. So I sat waiting for the nurse to come back, which she does quite promptly carrying an A4 sheet and my scan. Inside I’m feeling happy as this looks promising. On the sheet of paper it says egg collection Friday. As you can imagine at this point my insides are swimming in a sea of nervous excitement. Even more so when the nurse goes through the next stage and when to stop eating etc.

Then bam she throws in the curve ball that pretty much shites all over my parade. “I’m not sure if we should call this plan A or B. Your follicles are still pretty small, but Mondays bloods were good so we will have to see how your bloods are today”. With that I’m out the hospital and on my way home via Sainsbury’s to get one of those hideous passport ID photos taken for my IVF file. Later that afternoon about 15:30 the mobile rings – the call. Bad news, no procedure on Friday the consultant wants me to continue the Menopur and Cetrotide for another two days.

Friday arrives; blood test number (no idea as I’ve lost count) and scan number (a lot). The nurse was happy with the follicle sizes and number so now the scary and exciting part of the process. The trigger shot! I  left the clinic with yet more medication and paperwork this time I did’t have to inject Menopur and Cetrotide on both days but I did have to inject the trigger shot (HCG) on Saturday evening which was approximately 36 hours before my procedure. Getting real now, only downfall is I wasn’t allowed to eat anything from midnight on Sunday but to be honest I was so nervous about what was to come that I probably wouldn’t have been able to eat anyway.

Egg Collection Day

It is Monday 08:30am, the weekend has been and gone and I am now sat in the IVF clinic with my husband. We were both so nervous about the coming hours. He had to pop off and do his business in a sample jar whilst I went into theatre and have some eggs extracted. I’m not going to lie it hurt like hell even with a double dose of sedative. That stuff is useless; its not pain relief it’s just designed to make you less aware but I was very very aware of everything and every needle.

Afterwards I returned to the cubicle to see an anxious husband waiting for me. I was left with him for an hour (I actually fell asleep during this time). We were then brought a cup of tea and some biscuits and once I had popped to the loo and collected some more medication we were able to go home. It was about 1pm by the time we got out of the hospital. I didn’t go back to work as I had booked the day off as annual leave and so glad I did because I just felt uncomfortably bloated and exhausted.

The day after the egg collection felt like weeks. 09:30 am I got a call from the embryologist 5 out of 13 of our lovely eggs had fertilised. Over the next couple of days I received daily calls to let me know the condition of my little eggs. Thursday’s call was to inform me that we were going to have embryo transfer first thing on the Friday.

Transfer Day

Doesn’t sound as exciting as football transfer day but when you’re at this stage in the IVF process it feels so much more exciting! This time there was no nil by mouth rule as there is no sedative given for this procedure. Hubby was allowed into the theatre with me. We got to see our little bean on the screen before it was artificially inseminated (another really uncomfortable and painful procedure). We once again had a duty cup of tea and biscuits and sent home with yep you guessed it more medication.

The two week wait

OMG what an horrendous and tortuousness period of time. That first week I was soooo uncomfortable, bloated and in pain. It felt like my ovaries were going to burst out of my abdomen at any minute. I tried to pre-occupy myself with work and TV and actually ended up watching the whole box set of call the midwife. Not a programme I would really recommend to anyone wanting a baby but it didn’t really affect me. Towards the end of the first week and beginning of the second week I started to feel really unwell. I developed a chest infection. I was coughing constantly and felt like an 80-odd year old woman when I tried to walk up the stairs.  My test date was for the Friday (17th March) but by Wednesday I felt so ill that I couldn’t resist I just needed to know if it worked or not. If it hadn’t I could take some night nurse or anything just to feel better.

Taking the test

EEEKKKKKKK it says positive! For the first time in over 5 year freaking years i have a pregnancy test in my hand that says positive. Shit! I can’t take any night nurse, or anything other than paracetomol. I was so happy but so sad at the same time. At least I was off work (on the sick) I just literally stayed in bed for the next 5 days. I did take the test again on my official test day and it was still positive so I phoned the parents to tell them the good news that the cycle had worked first time.

7-8 week Viability Scan

The first week of April was the longest week of our lives. I had developed a stomach bug over the previous weekend and beginning of the week (thanks to the husband for bringing home the germs). So far I had not experienced any morning sickness just this nasty bug. Unfortunately, on the Monday I started to bleed. I have never cried so much in my life and had a feeling of utter helpfulness. I rang the early pregnancy unit but because our viability scan was for the Thursday we weren’t offered an appointment any sooner. That three day wait was longer than the whole two week wait put together. 15:00 Thursday James cook ultrasound department we sat waiting desperately hoping our little miracle was still arrive.  We had a student sonographer in the room and I explained that I had had a bleed and we were worried so the fully trained technician did our scan. She popped the probe on my stomach moved it around a few times then exhaled and said oh can’t see much. Our hearts descended to the depths of no return. quickly she looked at us and said there’s something but hard to see could you pop to the loo and we will do an internal scan instead. Quick toilet trip and I’m back on the bed. Probe goes in and within seconds she says with a smile there’s a heartbeat. Joy sprung to my heart I looked over to my husband and he grabbed my hand. The sonographer started talking saying there was measurements and stuff that needed to be taken. By this point I was on cloud 9 she could have spent the next hour taking measurements we had a heartbeat!

Now we are classed as officially pregnant with our first child however, we held onto that news for another 3 weeks until our 12 week scan. We then told the parents again but with a scan photo and then also told our nearest and dearest.

 Katherine xo

Further reading: IVF: The real story about what it’s like to go through IVF