This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Idiopathic Thrombocytopenic Purpura

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Platelet Infographic from timesofindia.com

I’ve been so inconsiderate. I’ve been lost in my own world of thought and when I do surface here it is normally with some musing over health versus ill-health or else a series of updates regarding my current bout of ill-health. It is so incredibly easy for me to drop phrases and terms in to my writing without the foresight to recognise that you most likely do not understand or know exactly what I am talking about. If you are familiar with the things I am talking about I still may not have been clear as to what and how I have been affected.

Looking back I have rarely been clear and concise about the ailments of my body and explained the manner they impact the body without rushing the explanation. Over the next short while I will endeavor to right this wrong and clue you in to my health concerns in a clear chronological way. Each post will then be linked back to my Chronicles page for your future reference. It seems only right that I will start with the first significant health concern, Idiopathic Thrombocytopenic Purpura (ITP).


Idiopathic Thrombocytopenic Purpura (ITP)

To begin with I feel it is best I break down the name into its Latin and Greek root origins:

Idio – one’s own, private, peculiar

Pathic – someone who suffers from

Thrombocyt[e] – Platelet, crucial component of the blood, necessary for clotting

Penic – Abnormal reduction

Purpura – Red or purple discolorations on the skin that do not blanch on applying pressure

I love the fact that the Latin translation of many medical diagnoses are the most succinct and apt way of describing the ailment. I was diagnosed with an abnormal disease of unknown origin in which I was unusually losing platelets within my body. There was no evidence of internal or external hemorrhaging (bleeding) but there was a concerning amount of Purpura at various sites over my body and in my mouth. The few bruises and cut I did succumb such as shaving nicks and stubbing my toe on bed ends were concerns for weeks and showed no sign of healing. I didn’t take photos at the time of the purpura, but I have a more recent one as they still show up occasionally.  I identified idiopathic as “one who suffers from a peculiar disease” but the truth is in medicine idiopathic is also used to term ailments with unknown origins. ITP is no different.

I was diagnosed with this disease at the age of sixteen, during the autumn of 2005. This came about when I had a bruise above my right knee the size of a grapefruit. It was black, as black as a bruise gets, and it didn’t change for the first two weeks. The third week I recognised I had also slowly begun accumulating the plum coloured flecks under my skin which I now know are the purpura.I didn’t actually mention to anyone what was happening all over my skin as I didn’t think anything of it, until the purpura appeared, giant black all through the inside lower lip of my mouth.

It was about that I time showed my boarding school supervisor, who took me direct to the doctor, who organised for my parents to pick me up and take me directly to Perth (my boarding school was two hours away in a rural farming community). When at the hospital in Perth a haematologist met me almost immediately and began testing. From what I know of blood tests, the vials they were talking from me had roughly 5 ml of blood in them. The haematologist explained to me that with a healthy adult they expect to see between 200 and 400 platelets in a vial of that size, yet in my blood I was showing less than ten. I realise these numbers were likely a perspective and a means of putting my health into a term I could better understand but I was rocked to the core.

Depiction of blood in a vessel from sw.org

My stay in hospital was informative if not much else. I was pumped full of platelets and steroids. Transfusions of clear fluids were maintained at my bedside. I felt like a fraud as I certainly didn’t look or feel unwell. The extended diagnosis was my spleen was destroying my good platelets idiopathically. The spleen is the site of immune systems maintenance in the body. If a foreign cell enters the body the spleen will identify it as irregular. The foreign cells are used as a template from which antibodies can be created to destroy the invaders. This process is our immune response in action and it is how we fight off infections such as the common flu, viruses and more. My spleen was confused, it didn’t like my platelets and so created an antibody to remove the ‘threat’ (my platelets). Platelets originate from bone marrow, so growth of these crafty little individuals is not too fast.

The role of the platelet in the blood is to clot. A clot is a build up of platelets and it occurs at the site of damaged vessels. A blood vessel carries blood throughout the body and when damage occurs the vessel exterior is cut or compressed. To prevent blood loss from the site of the damage platelets adhere to the area and to the building up platelet site. Without platelets the body could bleed uncontrollably and constantly until all the blood was lost. A simple bump can turn into a potentially fatal incident.

Spleen image from Web MD

When my thrombocyte count was above ‘100’ in the count I was released. It took two years of ongoing maintenance and steroidal treatments before I was advised I no longer needed to be concerned with monthly blood tests or prescription assessments. As I have learned there are two types of this illness, Acute and Chronic. The former relates to it being a short-term concern and the latter is an on-going issue. I suppose mine was Acute and the more I think on it I also suppose it is not so much Idiopathic, as a symptom of my Systemic Lupus Erythematosus (SLE).

At the time however I was simply a sixteen year old girl with pressing concerns about whether this issue would keep me from my upcoming date with my crush and if my final year of high school would be interrupted to the extent that my studying would be hampered. I know what you are thinking: teenage priorities!

The date was okay but the study wasn’t.

The best resource I have found for this condition is found here.

The Mayo Clinic also explains here.

Below are images from the internet of Purpura. As you view them it is important to note that these are not raised, on the surface or in the surface of the skin. They are directed below it, appearing somewhat like burst blood spots below the skin surface.

https://encrypted-tbn2.gstatic.com/images?q=tbn:ANd9GcT_D80cTucmL-mBNmZFJaa4S7Ln4Hd5DLodD7CodoXwv4cUtrF_iw

Purpura

Purpura

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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