I want to introduce you to Abiola who has kindly written a blog for you to read.
Hi, my Screen name is Abiola. If you are looking here because you feel you have or may have Lupus or a related condition then maybe my potted history can be some help.
I post regularly on the main LuPUS Message Board (lupus-support.org/LuPUSMB) this page represents. I believe I developed Lupus following Glandular Fever nearly thirty three years ago. I also have some secondary conditions including APS (Hughes Syndrome).
It took nearly twenty years of worsening health for a Diagnosis and treatment.
Lupus can be hard to diagnose, the symptoms can be non specific, time can be needed to see how things develop etc. All the same I believe diagnosis is often made rather difficult. I am no Feminist but because the majority of Lupus patients are female I do believe it can be trivialised, misdiagnosed as stresses of Family Life etc.
Although I am pretty badly affected, many other Lupus Patients continue to work, many do not need particularly unpleasant medication etc. In other words my story is not meant to alarm.
I had suspected Lupus , in a vague kind of way, and it was the LUPUS Message Board run by Ros which put me in touch with people who had also struggled to get a diagnosis for various reasons. They were generous with their knowledge, and after all those years within 3 weeks I had a diagnosis , a treatment plan and a decent Consultant who specialised in Lupus! The knowledge of others and their experiences saved me a lot of Research, which was great because I was too ill to do it.
Even getting the diagnosis can be a really emotional time, you want the diagnosis-but not what goes with it.
My Daughter is also diagnosed, which is sad as she is only 21. (Lupus is only very weakly something which is inherited-she was just a bit unlucky)
I intend to stick my neck out here and say that what I found surprising and alarming in equal measure was the lack of emotional or psychological support, not just surrounding the diagnosis, but during many tough times since. I owe a very large debt to Rosalind Share and the Members and past Members of the Lupus Message Board-not only has their support and friendship been much appreciated, I have not found anything even remotely approaching it elsewhere.
Because of my own experiences, I try to be available to help and empower others. I am not a Doctor, I do not wish to be one, I am just someone with a lot of personal experience and a strong desire to pay back the kindness I received and still do.
Whatever your health needs are, I wish you the best you can be!
