Glenda Lattimore

Type of Porphyria

Erythropoietic Protoporphyria (EPP)

My name is Glenda Lattimore, I am 56 and have EPP. I live in a suburb of Hobart, the capital city of Tasmania, Australia.

I was finally diagnosed at 13 after many years of bizarre symptoms. Doctors never could work out what was causing my symptoms. Sometimes I would get my symptoms after swimming in a pool leading to my parents thinking perhaps I was allergic to chlorine, but sometimes I had been nowhere near a pool. There were times I had been playing in a sandpit, so my parents thought maybe I was allergic to the bleached sand. However, there were times I had just been playing outside. Looking back I really feel for my parents, who had a child who would get clearly very painful, agonizing symptoms (my 2 younger brothers never had symptoms after having done the same activities as me). They were at a loss as to what caused them.

Finally, when I was 13, I went away to a youth camp for a long weekend. We did lots of outdoor activities, including an afternoon canoeing on a very sunny day. I ended up with the worst, most agonizing symptoms I had ever had. My mother took me to our local doctor, but because it was a long weekend, our doctor was replaced by a locum who just happened to have been to a conference the week before on Porphyria. I was sent to see the Specialist that ran the conference, was admitted to the hospital for a week and had lots of tests done. This also involved many doctors and medical students standing around my bed asking me questions which for a 13 year old was quite exciting. Finally, I was diagnosed with Erythropoietic protoporphyria EPP

To begin, I took beta carotene capsules which had to be specially sourced, but because they made me yellow, I just learned to control my condition by avoiding the sun. There were lots of times up till the 1990s when I had really painful, agonizing symptoms. Since then I have avoided really bad attacks, as soon as I get any tingling which is very often I know I have to retreat indoors.

Living in sunny Australia is very challenging at times, but if I want to venture outside, I cover up completely as well as using hats, gloves, and umbrellas. It is okay in winter being covered, but in Summer , I often get hurtful comments when out and about covered.

I am married with 4 adult children, Nathan 26, Joshua 24, Bethany 22 and Timothy 20. None of our children fortunately have EPP. I was never going to let my EPP stop me from having children. My only known family connection is my 2 female second cousins who are sisters with no other siblings on my mother’s side. Their Grandmother, my Aunt, had observed me as a child before I was diagnosed sitting on her porch in Queensland trying to get a cooling breeze with my hands, feet, and face draped in cooling wet cloths. Something is much easier to live with when you know the cause.

My husband and I love traveling, I just have to cover up and cope with hurtful looks and comments. We really love cruising. I find cruises really liberating because, during the day, I can walk around inside the ship in my summery clothes and sandals participating in all the great activities and then at night after the sun has set, I enjoy the freedom of being up on deck.

I have never met another person with EPP. I fly to Melbourne once a year to be monitored by Melbourne Hospital’s Porphyria Clinic. It is so refreshing to be treated by doctors that truly understand what it is like to have EPP, when I first met these doctors they said ‘no one really gets what it is like for you having EPP do they.’ Many times over the years, I have had to do my own medical research.

I hope you have found my EPP experience from the other side of the world interesting.

Kind regards,
Glenda Lattimore

Here are some photos,

Steve & I

Last year on a cruise visiting Moorea, French Polynesia

My husband & I with some of our family on a trip earlier this year

Enjoying Fish and Chips outside but at night

Christmas Day with our family

I am always so relieved when that sun goes down