Elspeth Lax, founder of PiXiE

Gillian Horrobin, a PXE Experience

Elspeth Lax, founder of PiXiE

When first diagnosed with PXE, Elspeth Lax felt suicidal. The information she was given at the time was so horrific and in many ways, incorrect. Fortunately, the firm she worked for at the time sent her to work in the United States of America for three months during which time she heard of and contacted Dr Kenneth Neldner of the Texas Tech University Health Sciences Centre, a leading authority on PXE.

Dr Neldner was able to put everything into a proper perspective for Elspeth, the outcome of which was that she became determined not to let any others with PXE suffer the way she had done from being given wrong information. She therefore founded the PXE Support Group in 1984.

In February 1997, Elspeth appeared on UK Living's Why Me? programme to discuss medical issues. The programme lasted about ten minutes and presented the opportunity to tell the public something about PXE.

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Gillian Horrobin, a PXE experience

I am aged 53 and since childhood I have had the PXE skin lesions on my lateral neck and folds of arms although I was unaware these lesions were caused by PXE. Until 1990, when at the age of 47 my sight deteriorated almost overnight, I had no further PXE symptoms.

Thanks to the competence of an Army Colonel ophthalmologist (I was accompanying my husband, an MOD civilian, on a Germany posting at this time) my sight problems were quickly diagnosed as being linked to PXE. He referred me to a leading German ophthalmologist in Hannover and also arranged for me to be seen by a Professor Shilling during a Greenwich Hospital Surgery - I understand Professor Shilling has had articles published on PXE. The result was I became registered blind due to the loss of my central vision.

In my subsequent endeavours to find out more about PXE my local (Dorset) Social Services put me in contact with the PXE Support Group and I attended the Conference held on the 4 August 1996 at High Wycombe.

However, enough of my history and onto the experience. On the morning of New Year's Eve 1996, I awoke, felt faint and suffered the most distressing experience of vomiting blood. After the immediate panic and worry as to what had caused this, I recalled that GI bleeding was a symptom of PXE and immediately contacted Elspeth and Bernard Lax at the PXE Support Group. They were most supportive and recommended that we should call our doctor/hospital requesting an ambulance immediately as one never knows how bad GI bleed is going to be.

Also Elspeth and Bernard put me in touch with another member of the group, John Savage, who knew a lot about GI bleeds having had several himself. After visiting my doctor, who gave me a blood test, I was told that if any further attacks were to occur then I was to phone for an ambulance without hesitation.

When I got home I called John and after a long talk with him I felt most reassured as he explained that he had been hospitalised with GI bleeds. Fortunately my blood test revealed no problems with my haemoglobin and after a few days rest at home I was back to normal. As readers will realise, I am indebted to Elspeth, Bernard and John.

The purpose of this tale is not to worry fellow PXE sufferers but to educate them if they are unfortunate to suffer a similar experience to mine - which incidentally I believe to be quite rare even among those of us who have PXE:
i) Link GI Bleeding Symptoms to PXE

ii) Take Action:

• Obtain immediate medical help, as you do not know what the severity of the bleeding will be.
• Call an ambulance
• If possible get someone to call your GP to let them know what is happening. Get the GP to call the hospital to explain you have PXE or better still take a leaflet on PXE if you have one.
• Get in touch with the PXE Support Group who will them put you in touch with another PXE sufferer who has been in the same situation. You will then feel reassured which will prove invaluable to you and your family.

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