RIP Edward Cahill
February 19, 1953–March 17, 2008

Lanarkshire, Scotland

This is the story of Eddie Cahill since being diagnosed with Degos disease, written by Geraldine, his loving wife.

Eddie was the youngest of a family of four, two sisters and one brother. 

He had normal childhood illnesses, no other major illness or injury. 

At the age of approximately 30, he had an accident at work where he lost sight in his right eye, and he used Timoptol eye drops to prevent ocular hypertension and subsequent headaches.

First sign of “spots'' was in 1999 following several appointments with GP’s. 

He was eventually referred to a dermatologist at the local hospital, treatment during this time started with hydrocortisone creams with no effect.

Then moved onto emollient creams then Cetirizine tablets (antihistamine) for the constant itch, particularly at night. 

Spots continued to appear, get bigger, burst crust over, and never go away. 

During visits to dermatology, blood would be checked for various things and the hospital photographer would take pictures to compare severity, frequency, and pattern of lesions. 

During these “routine'' blood tests, it was discovered that Eddie had pernicious anemia and was prescribed folic acid, ferrous sulfate, and Cyanocobalamin. 

His hemoglobin was approximately six at this time. 

Eddie was also having chest pain prior to his diagnosis, but ECGtracings showed no abnormality. 

Dermatologists eventually done a skin biopsy of a few lesions but would not admit a diagnosis until six months after first biopsy, repeated it then confirmed the diagnosis of “DEGOS” this was approx 2003/2004. 

From then on Eddie got on with life and was blessed with four grandchildren, whom he enjoyed and loved very much.

Uncountable Lesions continued to appear all over his body, including palms of hands and soles of his feet. 

Further sigmoidoscopy eventually confirmed Degos disease lesions in his lower bowel, which had bled and caused bleeding. 

Eddie was then invited to teaching sessions for medical students, junior doctors, and other dermatologists every six months to further their knowledge on Degos disease. 

He remained symptom free and healthy until august 2007, when he developed neurological symptoms, and when looking back were regarding Degos disease, but due to ignorance, didn’t associate it to the disease. 

On further investigation on the web site we now know more.

During a holiday in Gran Canaria in September 2007, Eddie had symptoms of a worrying nature i.e., numbness, tingling on the left side of his upper limb traveling up his face with the dropping of his jaw. 

On return back to the UK, Eddie attended his GP who told him Quote “Degos is not life threatening” and sent him to a ‘well man’ clinic to check his BP and cholesterol. 

One week later on 01/10/07, while showering prior to an appointment at a TIA clinic, Eddie had a seizure activity down the left side of his body and was admitted to Wishaw general hospital. 

He had a CT scan on 02/10/07, which showed a bleed on the frontal area of his brain, again “nothing to worry about!” That evening Eddie suffered two grand mal seizures and an episode of Atrial fibrillation. 

The seizures were treated with an epanutin infusion and the AF was treated in CCU/MHDU with a digoxin infusion. 

By this time Eddie had a left hemiparesis (stroke), this being his dominant side, he was totally dependent on nursing staff. 

Over the next five days, he became less aware of surroundings family and friends, conscious level deteriorated and GCS dropped to a worrying level. 

On the 08/10/07, following another CT scan and a CT venogram and discussion with neurosurgeons and neurologists at the Southern General Hospital, Glasgow (a center of excellence for neuroscience), it was decided to transfer Eddie to this specialist unit.

Following surgery, which was a right parietal craniotomy incision and drainage of frontal clots, reduction of intracranial pressure, Eddie was admitted into the intensive care unit. 

When I visited with our son and two daughters in the middle of the night after his surgery, the doctors were delighted with his progress. 

He was fully conscious and oriented. 

Eddie continued to improve and was eventually transferred to the physical disability rehabilitation unit. 

After two days he was walking with a Zimmer, and we were all very proud of him. 

Unfortunately he developed a DVT. 

On the 07/12/07, he was discharged home with the assistance of the early discharge team in the community physiotherapist, occupational therapist, and GP who gave him weekly acupuncture.

Medications that Eddie used were:

Epanutin 300mg daily (seizures)
Lansoprazole 15mg (hiatus hernia)
Cetirizine (antihistamine)
Perindopril 2mg daily (hypertension)
Simvastatin 40mg daily (cholesterol)
Warfarin (following DVT) 5mg daily
Paracetamol 1gm 4 times daily
Zydol 50gm 3 times daily
Ferrous sulphate 3 times daily

Eddie also attended neuro ophthalmology, because the Degos disease affected his left eye, and the vessels were all blocked; however, the Warfarin therapy made a big improvement. 

Throughout this time, Eddie continued to develop more and more lesions, but became more independent apart from his left arm his proprioception was never getting any better. 

We went on to enjoy a lovely Christmas surrounded by the family.

At the beginning of March 2008, Eddie developed a constant headache and nausea and I noticed that the craniotomy area of his skull was less dented. 

Eddie was admitted to hospital again, and had another CT scan revealed another bleed at the right parietal area. 

That was discussed again with the neurosurgeons who decided that, due to the fact that there were no new neurological symptoms, no further surgical intervention was necessary, so Eddie was discharged.

During the following week, Eddie deteriorated at home, symptoms included increasing headache unrelieved by strong analgesia, nausea, confusion, disorientation, decrease in mobility, poor or no appetite, poor motor skill, and visual disturbance. 

He was eventually re-admitted to Wishaw General Hospital and, after four days, collapsed, lapsed into a coma, and died on March 3, 2008 at 6:45 p.m. 

When nursing staff prepared Eddie for family to see him for the last time and we all went back into see him, we noticed that he didn’t have any lesions on his skin anywhere on his body and he was very peaceful.

The neurosurgeons said that the frontal bleed was caused by a Degos disease lesion in his brain, and we will never know if his further parietal bleed was due to a lesion as there wasn’t a post mortem examination carried out. 

Our son and two daughters have been referred to a genetics specialist and are currently waiting on an appointment. 

We, as a family, hope this story helps other Degos disease patients and hope to hear through the web site if this information has been any help to anyone.

Eddie was a good, kind, and loving man, and it is a great loss to everyone who knew him, especially his family who miss him dearly.

Geraldine Cahill, Loving Wife