April27
Every time I think, hey I feel fine, I’ll get back to work, I’ll, I’ll, oh damn, another infection… third one this year… I say, its ok, you are ancient in terms of primary immune deficiencies… Read the rest of this entry »
March20
As the screenwriter of the film Nobody Nowhere (based on the international bestseller of the same name), I was excited to see the recent interview this week by Nadine Maritz with the one of the film’s producers, Beverly Nero and our award winning Hollywood director, Dan Ireland. I look forward to the casting developments, obviously particularly the casting of the lead role – Donna. Read the rest of this entry »
January24
Hello Donna,
My name is Tilly and I’m an A-level art student from a UK secondary school called Ruislip High.
While searching through the Internet for inspiration, I came across your website and was completely inspired. Read the rest of this entry »
January22
Tell people you keep bursting veins in your fingers and seems everyone has a story. Similar, however, isn’t same, so here, in detail is what happens with mine and my cousin’s. Read the rest of this entry »
January17
Being 49 years old and just diagnosed with EDS IV (vascular type) I ask myself how I got this far with a condition that has an average life expectancy of 40 years old and a median life expectancy of 48. I have certainly had a lifetime of health issues but I haven’t had the brain aneurysms or uterus rupture of my cousins nor yet had the diverticulitis of my brother. Did I do anything differently to others growing up with EDS IV? Here’s my views on what I may have done right, by choice, by default, by accident. Read the rest of this entry »
January17
Glue me together and glue me well
or at least make me youthful so no-one could tell Read the rest of this entry »
January13
I saw a Clinical Pharmacologist this week about my Dysautonomia. I have been told I have Ehlers-Danlos type 4… the vascular type Read the rest of this entry »
November18
Sure, I’m immune deficient, have dysautonomia and central apnea and did breast cancer last year, kicked its butt with a double mastectomy and chemo and keep it at bay with Tomoxifen BUT the best I can hope for is that WHEN I die… and its inevitable we all will, then I want to leave this world knowing I had a great time in this crazy playground and that as a Taoist I was grateful for the good, the bad and the ugly Read the rest of this entry »
November1
Hi ho Silver, away!
Lone Ranger, you were not Read the rest of this entry »