Hold That …

So wait … am I correct in my “information” that Lady Gaga’s “infamous” “aunt” Joanne died from Lupus? If this is TRUE, then HELLO! I should not need to scream too loudly to get the attention I am seeking! All of these diseases are VERY close – as far as Behcet’s goes (this is a funny story – I am sure I’ve hinted at it but it deserves its own post!) the differences in labs are often the MAIN if not ONLY means of distinguishing Behcet’s from the “true” autoimmune diseases – that is, Behcet’s is AUTO-INFLAMMATORY (we do not, as a “standard,” as far as we know NOW) produce the auto-antibodies that are seen in diseases like Lupus or Crohn’s Disease or Rheumatoid Arthritis (this is also beneficial for Behcet’s patients in that treatment with biologics like Remicade CAN cause a “Lupus-like reaction” – I have had this happen! – and the MAIN means by which such “sickness” can be determined is if one suddenly develops auto-antibodies!). What I am getting at in that regard is that often very specific types of bloodwork are the only way of differentiating Behcet’s from other very serious diseases like Lupus – the symptoms are, with some subtle differences, often overlapping if not the same. Behcet’s, for instance, tends to “attack” the eyes; we know that RA goes for joints (Behcet’s does too; Lupus does too; Crohn’s does too; &c.) and Lupus for kidneys (&c.) and it works both ways – there are many incidents of ocular manifestations in those with Lupus and RA and Crohn’s and all of the other autoimmune diseases. There are two other “main” differences that I can think of off the top of my head – 1. Behcet’s has the POTENTIAL to get “better” over time (I know very few people for whom this has proven true) – this might seem “beneficial” but you have to remember that those of us with the more “classical” HLA-B51-type Behcet’s tend to get hit HARD in our 20s and 30s – and we tend to miss out on all of the things that happen in those years (the topic of much of this blog!); and 2. Behcet’s is a type of VASCULITIS that affects BLOOD VESSELS OF ALL SIZES (this is incredibly RARE – most types of vasculitis affect either large or small blood vessels – I promise I will get into all of this over time!).

So. Lady Gaga. You knock at doors? I am knocking at yours. Many of the amazing people I have met over the last few years have been diagnosed with the “true” autoimmune diseases and we all have a LOT in common (that is, those of us who have “true” Behcet’s – that is, a formal diagnostic diagnosis, meaning one that meets the – in my opinion not strict enough – criteria for actual diagnosis – again, I did list the International Criteria for diagnosis somewhere in this “blog” but I WILL COME BACK TO IT, I PROMISE!). These are BRUTAL diseases; Behcet’s carries a very high risk of blindness once it goes systemic (meaning, it affects the eyes or the CNS or has intense vascular involvement, &c.); furthermore, if you take the administration of azathioprine (Imuran) off the table (I cannot metabolize Imuran and a HIGH percentage of the population also cannot – I will come back to that one as well!), Behcet’s has somewhere between a 10-20% mortality rate. That is not negligible.

So I do implore all of you with or without chronic illness to help me BANG AT THE DOOR and SCREAM AT THE TOPS OF OUR LUNGS to get some bloody attention – as I have stated before, I truly believe the disabled and those with severe chronic illness / disease (ESPECIALLY “invisible illness” like LUPUS and BEHCET’S and all of the others I have mentioned!) are the most greatly “marginalized” groups of people left – we cross all genders and sexual preferences and types and races and demographics of all kinds – we affect the rich and poor equally and these diseases don’t really care who gets it bad and who doesn’t – health insurance for treatment is ESSENTIAL just to ensure SOME quality of life and the CHANCE TO LIVE LIFE and we DO NOT HAVE THAT GUARANTEE IN THIS COUNTRY AND THAT IS NOT OKAY. It is NOT OKAY that people who are so ill have to wait 5-6+ years for a place to live. It is NOT OKAY that some people I know who can barely walk get $15 a month for food. I could go on and on and on. I intend to do so. But for now, I am just getting out a little bit more info and trying to dig a little bit more deeply so the screams might be heard a little bit more loudly….

I hope you are all having a happy and healthy day wherever you are in the world and please know you are ALWAYS in my heart!!!

❤ Always, Beth