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Personal Stories

Personal Stories from members of our group.

Behçet's Disease – Dot's Story

I was diagnosed with Behçet's Disease in 1996. My first attack was very sudden and unexpected. I had gone to my Doctors for my regular acupuncture for a chronic back condition and was running a high temperature and had discovered a rash on my stomach. On mentioning these to my GP he noticed that the rash had, in a matter of hours turned to 'pustules' (very sore raised red lumps with heads) and immediately put me onto Prednisone. The next day I was passing clots of blood and pus from my bowel and I was told I had some form of vasculitis. It took 2 years and many, many varied Specialists and 'suggested diseases' to eventually diagnose Behçet's Syndrome Disease. My GP actually personally diagnosed this in the first few months and was my main support throughout those dreadful years.

In the ensuring years I was on a roller coaster of trialling drugs, having systematic attacks and becoming more and more depressed. I attended pain clinics in Auckland and Queen Elizabeth Hospital Rotorua to help cope with the ongoing pain and deal with the frequent attacks of dizziness, ulceration, extreme tiredness, ulcerated eyes, etc.


I had a chronic back problem and this led to difficulties with ACC and they eventually dropped me from their books citing my disease as my biggest problem. I was on Thalidomide which is known to tend to cause nerve damage and I was deteriorating badly with a great deal of pain and was now in a wheelchair because walking, balance and nerve problems in my feet were making life very difficult. My thalidomide was cut off, restarted, then halved but the problems still worsened and eventually, last year 2002 it was agreed that my back may be the cause of the nerve damage in my feet and ACC eventually accepted the responsibility of my having surgery.

The surgery was not wholly successful, as my back was in too bad a way, but the nerve pain was virtually eliminated immediately and I have now been left with just numb feet worsened with walking. I am out of my wheelchair and extremely independent again and feel I have regained my life and pride again. Life is pretty good now.

Around the year 2000 I placed a letter in the NZ Women's Weekly asking anyone with the disease to contact me and made contact with Becky Gartner from Napier and together we set about setting up a Support Group in NZ. By now we were both under the care of Dr Lachy McLean, Rheumatologist/Immunologist Auckland Hospital and in conjunction with him were able to organise our one and only NZ Conference at which he dedicated a whole day. This Conference was attended by around 12 people and their partners and proved to be most valuable with Lachy speaking to us on treatments, expectations, etc.

Sadly, Lachy was unable to access funding for Research in NZ and has since moved to the UK to continue with research, and we have not as yet been able to find someone to fill his shoes nor help us to organise another Conference and speaker.
 


Also, in 2001 the local Disability Centre in Kaikohe where I live, gave me the name of John Forman of the Rare Diseases Organisation and we became a member of this organisation, which is wonderful because we do not now feel so alone.

I am now back on my Thalidomide and my nerve conduction tests have remained stable which is good news. My disease still continues to attack me with continuous ulceration and currently it appears to be attacking my bowel and I am feeling permanently nauseous and very unwell. I once read amongst all the material I have gathered over the last few years that Behçet's is possibly one of the most painful diseases one can experience and I would tend to agree with that, but along with many others with it I have accepted that this is a way of life now and have learnt not to set too higher goals and just get on with living.

Currently, I am trying to find a way I can gain Counselling qualifications so I can use my past experiences to help others as I was helped. This is proving a very difficult task because I can really only commit to part-time study and this is hard to find and extremely expensive, but I am still plodding on trying to find something suitable. Also, I am nearly 57 years old and am wondering if I am doing the right thing looking at starting a new career at this age, especially with a disease such as this.

If you are reading through our site and know of someone who has our disease or going through the diagnoses please ask them to contact me. If you are a Doctor or a Specialist who would like to give our members of 14 some time, to talk with us, to give us some advice, to provide us with more information about our disease should we organise another Conference in Auckland, then also please contact me…..we really need your input….and your help.

To those with Behçet's the following is a poem I wrote when I was first diagnosed and you may recognise yourself in it.

BEHÇETS - my friend 

I have learnt to live for today, my friend

As tomorrow may be filled with pain,

And this is my life with Behçets

As it comes and then goes, again.
 


The today's are so very precious, my friend

Let me catch up with you in that time,

Let me be with you and help you out

Share a laugh and joke, while fine.
 


For tomorrow could be very bad, my friend

It may hurt to move from my bed,

I can ache from one end to the other

There is pain tearing at my head.
 


I have learnt to live for today, my friend

When life is so very grand,

But tomorrow cannot be avoided,

Maybe then... you could lend me a hand.

Dot Field (2003)
NZ Behçets Support Group