AUME – Invisible Visitor

Polyarteritis Nodosa – The “Invisible” Visitor

The first diary entry

The bed felt cold, lonely and I couldn’t wrap my head around the fact that I was in it. It scared me. They told me they would run a few more tests and that there wasn’t anything to be worried about. I closed my eyes, took a deep breath, and felt the gentle squeeze of my dad’s hand. It felt familiar, reassuring.

We had been traveling the country over the past few months to get answers. What was happening to me? I was 12 years old and I couldn’t recognize myself anymore. Black-bluish scars and other red blotches of raised red skin bombarded my legs. There were days when I woke up and couldn’t get out of bed. My knees so stiff my mum had to put a warm compress beneath them to help stretch them out (later I would find out this is what arthritis is).

I would get ready for class and get so frustrated for doing just simple tasks like trying to brush my hair. These skin disturbances or “lumps” as I always referred to them as were spreading all over my body, and it wasn’t just that they looked bad, they were painful to touch and restricted the mobility of the joint they inhabited.

These amongst a myriad of other symptoms were my taste of what an autoimmune condition could do to you.

It would take me 8 more years, 4 misdiagnoses, 8 hospitals, 12 specialists to get “officially” re-diagnosed with Polyarteritis Nodosa.

Beginning the journey

From neurologists to rheumatologists and otologists (ok you get the gist, no pun intended, ok maybe it was) and numerous GPs & ER teams, innumerable breakdowns and 8 major flare-ups, is how I got to the Polyarteritis nodosa diagnosis.

Looking back, I believe I have learned so much and I feel that my lessons could help a lot of people. Polyarteritis Nodosa (PAN) is one of the many rare autoimmune conditions that exist today.

An autoimmune disease in my own words, is when the body believes there is an “enemy” inside, even though there isn’t. It’s when our body’s tissues attack itself, instead of this so called enemy that the immune system is detecting.

An autoimmune condition can manifest in many ways. There are more than 80 different autoimmune diseases discovered so far. One problem with these conditions is that some of them mimic each other. It is always best to get the closest diagnosis you can. While a lot of other Autoimmune diseases are treated are similar, being diagnosed can change the whole course of your condition, especially if you are getting treated for symptoms you aren’t even experiencing.

Research shows that PAN occurs more frequently in males, and in the age groups of 50-60. However, obviously cases like mine exist.

Juvenile conditions

Looking back and having all the knowledge I have about conditions like mine, I realise the process started in me when I was already 12 years old.  I feel strongly about educating people about this condition, while it is a serious illness, it can be treated and you can live a full life. Albeit a little bit different where you will need to make some changes, but never lose hope. There is a large network of people out there going through similar cases even if it isn’t exactly PAN.

In the next few blog entries, I would like to tackle other issues that those with PAN or autoimmune conditions face and help give some advice to get you through your dark days.

Having an autoimmune condition can be very frustrating, you may go through a lot of times when this “invisible” or faceless enemy inside you really tries your inner strength.

Trust me, I’ve been there. It can be a lonely, scary journey, but you need to keep your friends and close. While it will be hard for them to understand, know that they love you and will learn to cope, as you do as your condition progresses.

In the future of this blog, I also want to make information more readily available for you. Here you’ll find all the information related to PAN and some other similar autoimmune conditions.

One stop info hub

I personally found that it has been hard to get all the information in one place, and have been researching for answers on my own for years. I think it is good to educate yourself to understand what is going on in your body and why. But it is also best to talk to your doctor. Be open and honest with them. If you feel you aren’t getting the support you need, it is okay to get a second, or a third opinion, heck I got twelve of them. I’ve seen all kinds of doctors, and with each experience, you can take a little bit of wisdom with you.

At the end of each blog entry, there will be links to these informational sites, the blogs themselves, however, will be firsthand encounters and information from a patients point of view. I believe we need to equip ourselves with not only medical information but “emotional” information. Conditions like these don’t just affect our bodies, they can affect our emotional well being.

What is Polyarteritis Nodosa?

Here’s a short video that helps explain PAN briefly:

An in-depth explanation of Polyarteritis Nodosa

For a detailed description of PAN take a look at http://www.empowher.com/media/reference/polyarteritis-nodosa

Polyarteritis nodosa is an autoimmune disease is a condition in which your body’s immune system mistakenly attacks your own body.

With Polyarteritis nodosa, small and medium-sized arteries (blood vessels that carry blood from the heart to the rest of the body) become inflamed and damaged. The inflammation of the arteries affects many different organs, including the skin, CNS, peripheral nerves, gastrointestinal tract, kidneys, heart, joints, ear, nose, throat and lungs. With cutaneous (or skin) PAN, leukocytoclastic vasculitis can be seen.

Polyarteritis Nodosa Support

If you want any advice, would like me to write about a specific topic or would like to share your story here please feel free to contact me via email or on social media.

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2 responses to “Polyarteritis Nodosa – The “Invisible” Visitor”

  1. Camille says:

    Hi Fiena, thanks for your comment. So sorry to hear about your struggles, your story is really powerful, how are you today? It’s so interesting to hear about your diet and cleansing, would be great to learn from you more about this. Please feel free to email me anytime 🙂 Yeah cortisone or prednisone is the same for me. Really bad for self esteem most times haha but hey thats the necessarily evil vs the pain and other symptoms hey..hmm looking forward to getting to know you, talk soon Cami

  2. Fiena Price says:

    I to am a long time suffer of arthritis. It started when I was 4 and a half. I suffered with excruciating pain and knees locked up every night for years. It was labeled juvenile rumatoid arthritis. I lived on caurtazone for the pain which left me fat and dumpy.
    I brought it under control when I was in my mid 20’s. With the help of a naturopath. Change of diet and cleansing program.
    July 2010 I fractured my ankle and over ther next 15 mths I had 12 exrays and scans an mri because the foot was giving so much trouble. Eventually the problem was corrected with the use of a brace.

    Late 2011 I lost most of the hair

    Late 2011 I started loosing my hair. It started patches on my head but then I lost all hair on my body apart from a thin mowhork strip about 3 inches wide on my head. I would say I have 1% hair and that is on my head.

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