Our Members

Birth Announcement Sophia Rose Sproule

I’m delighted to share with you the wonderful news that my daughter was born on the 22nd of July. 

For us, she truly is a little miracle that we never thought possible. 

I was diagnosed with Microscopic Polyangiitis in 2005 at 18 years old. Despite being in medication to suppress the illness, I ended up on life support in 2006 after suffering a pulmonary haemorrhage. During this time, I received (among other things!)  a number of courses of cyclophosphamide. Upon pulling through, I was told that my ability to have children was likely to be badly compromised. 

Thankfully, after years of being carefully managed by Mark Little, I was advised that I should try so I weaned off my medication over a few months as my disease had been stable for a couple of years. 

My husband and I were delighted to fall pregnant. Unfortunately, we suffered a miscarriage very early on which was devastating. However we were absolutely over the moon to quickly fall pregnant again with our beautiful daughter. 

Throughout the pregnancy, I was seen every two weeks at the Ulster Hospital by both the antenatal team and the renal team with input from the Haematology team. 

I cannot praise the level of care received enough! Although no one had dealt with someone with my illness before, I was handled with care and with confidence. 

If you are in a similar situation, and perhaps have been told or believe you may find it difficult to have children, please talk to your consultant – and don’t give up hope! 

 

 

By |October 6th, 2016|Categories: Our Members||0 Comments

Wegener’s Granulomatosis – It’s very treatable

“It’s very treatable” 

said the consultant and so it has turned out to be.

That was in 1999 when I was referred to a hospital consultant by my G.P. for an unusual array of symptoms.

These included continuous tiredness, painful leg muscles and a cold that would not go away. Fortunately my early diagnosis by the consultant that I had Wegener’s Granulomatosis, a form of Vasculitis, meant that treatment with the appropriate drugs could start right away. Of course I was sick for a while, but quickly regained most of my energy and ability to lead a fairly normal life over the last thirteen years. Naturally there have been some changes; including taking pills and having frequent hospital visits and tests, but these have been readily accepted as a slight modification to my routine. Certainly living with W.G., or as it is now known Granulomatosis with Polyangitis, has hardly curtailed my ability to go trout and salmon fishing, dabble in photography, do voluntary church work, research my family tree, attend Irish history classes and potter around the garden. So it is possible to enjoy life in all its variety while acknowledging the presence of Vasculitis. in the background. The best way of achieving this is to be involved, as far as possible, in as many interests as you can, and to welcome the opportunities of meeting and mingling with people .both at work and socially.

B.H.McC.

By |November 12th, 2015|Categories: Our Members||0 Comments

My experience of Churgg Strauss Syndrome

“You have Churg Strauss Vasculitis” the Consultant informed me.” “Can you write it down, please”

Churg Strauss meant nothing – but Vasculitis – the daughter of a friend suffered from that and she has had two kidney transplants, not good news then.
“You’ll be in hospital for four weeks. “ FOUR WEEKS – but I had so much to do with my work etc. However I had been under the weather for sometime so if I was to be fixed in four weeks then I could live with that.
The previous week I had severe back pains, a new ill-health acquisition for someone who had many years of suffering from asthma and nasal polyps. My GP informed me that I had a trapped nerve in my spine and I accepted that until on Saturday night the pain which had moved to my legs became so severe that i sent for the out of hours doctor who gave me strong painkillers and advised me to see my GP on Monday. The painkillers worked – I slept soundly and awoke to find my legs didn’t work, they were rubber. I thought I had CJD as I walked like the ailing cows i had seen on TV.
Off to the A&E in the City Hospital (it existed then 2004) and after a very long day, cursory attention from the triage nurse, many repetitions of my symptoms to a trainee/very young doctor, I eventually saw a competent doctor who admitted me and even found me a bed, all be it in a geriatric ward – I was fifty-one at the time.
I was wired to a heart monitor and during the night it went into explosive activity and […]

By |November 12th, 2015|Categories: Our Members||0 Comments

Takyasu and Me

I am a 52 year old married woman who up to the summer of 2011 was working as a special needs teacher in a primary school, I had helped my brother and sister care for my elderly dad who had a stroke 2 years previously and for my Mam who has Alzheimer’s and is now in a nursing home. I have two aunts in their 90’s who live locally. My life was busy and I wasn’t surprised when I began to feel extremely tired, had some fairly bad headaches and had what I thought was a stress pain in my chest, towards the end of June 2011, the final week of the school year.

The previous week I noticed a lump on my neck but thought I had bruised it with the car seatbelt and didn’t do anything about it. That is until I woke up one morning unable to smile as one side of my face seemed paralysed. I promptly went to my GP who was more worried about the lump on my neck than my face and what she diagnosed as Bell’s palsy. I subsequently spent a week in A&E where they scanned my neck and the lump I noticed was diagnosed as an aneurysm on my carotid artery.

They sent me home to wait for an out-patient appointment at the stroke clinic in the Mater Hospital in Dublin. As time ticked on (ten days later) and after my husband had made numerous phone calls I was admitted to the acute stroke unit in the Mater. My symptoms were shooting headaches, extreme exhaustion, absolutely no appetite (I hadn’t realised I had lost about 2 stones in weight and was now only 7stone), the pain in […]

By |November 12th, 2015|Categories: Our Members||0 Comments

Brian makes sure to stop and smell the roses!

In the first of our members blogs, we hear from Brian and how he has managed his illness since being diagnosed in 17 years ago:

My name is Brian and I  was diagnosed in 1999 with G.P.A or Wegeners. 

I was hospitalised with the treatments of chemo and drugs to combat lungs, kidney, sinus and throat involvement . Since then I have had a few relapses although Prednisolone taken daily seems to keep me in remission.

I have always been interested in gardening and since my wife had a stroke two years ago necessitating my becoming a carer to her, my time to follow my hobby has been curtailed.  Despite this and my developing osteoporosis  and arthritis, I still manage to grow a few flowers and tend shrubs. A friend cuts my grass and hedges leaving me to do the easier and more pleasurable gardening jobs while sitting down often to survey my work and plan further jobs. 

PS. Early next year I will be 80.
 
 
Do you want to share your story for others to see? Email julie@vasculitis-ia.org 
By |September 30th, 2015|Categories: Our Members||0 Comments