why the ignorance?

I really have felt ignored. My father is a retired GP and my brother-in-law a practicing one. I have never seen them treat a diagnosis of a family member like they do ITP. Responses from them have ranged from "Forget da bout id (mafia accent)", complete change of topic, to an admission from my retired 80+ father that he is just not interested (that hurt!). Other family members have shown more compassion.
My GP, who is a pleasant person, appears to know almost nothing about it and does not seem to want to update her knowledge. The haemo I saw at the oncology department of a large public hospital showed a similar lack of interest, especially with my count being too high to warrant treating. I got the feeling that he also wanted me to "forget da bout id". His message was - don't worry, when you get sick enough we can fix you up :ohmy:
I've heard several others express similar frustations on this site.
Is this attitude just because the medicos don't have the answers, can't adopt the usual "we'll make it better attitude". Then why don't people with cancer come across the same ignorance? More treatment options? Symptoms/pain levels? Funding and research?
Cancer and other auto-immune diseases are as much idiopathic (ie.no known cause) as ITP, but I've never heard the word idiopathic used for other conditions like they use it for ITP. I guess diagnosis criteria accounts for this to some extent
Could it be because that the symptoms aren't as visible, debilitating or as and acute as some other chronic conditions eg. rheumatoid arthritis, motor neurone disease et al.
Then of course there's that tiredness issue. Poor ol' chronic fatigue sufferers have a devil of a time being understood.
Is it because ITP is not usually given on death certificates?
I guess one advantage of my doctors' lack of interest/knowledge has been their willingness to allow me to have more input into managing this condition. I am sooooo grateful to all the wonderful people who share their experiences and knowledge on this site. There's no appropriate emoticon to express this feeling of appreciation.
I would love to hear about other's experiences, theories, explanations, comments and especially ideas of what we can do to turn it around. This site is invaluable but I wish we could get the information out more, especially in countries where they don't have the ITP specialists and conferences that you guys in the U.S. have (like Australia for example )
Thanks for reading this. It's helped just writing it.
Seasons greetings to all.

I sort of understand your frustration. I'm not an ITP patient, but my child has it. We found a great hematology group at a medical college hospital, and that has made all the difference. The pediatrician who initially gave us the ITP news (count was 23) was pretty casual, with a plan to repeat a CBC in a couple weeks and consult a hema by telephone. A physician friend learned what was going on, and got us a referral to our wonderful docs. Since then, we've never again seen our FORMER pediatrician, who never called to follow up, and probably has no idea Julianne was hospitalized four times in the first year. Docs who don't understand ITP don't seem to want to learn. Friends and family who don't understand ITP thought she was "all better now" when IVIG brought the count up to a safe level. When she was in and out of the hospital, many sent cards, called, did wonderful things to make life a bit easier, like bringing dinner at stressful times. They were compassionate, but still, they couldn't really discuss the disorder they didn't understand. Others stuck their heads in the sand, and we never heard from them. What really hurt was when a close family member never called to check on me and my child when she was hospitalized, and, when I called her to inquire about her health during the same period, she never asked about my child. (Some folks are wrapped up in themselves, and that can't be fixed.) Some docs think it's a simple matter: have your spleen removed. Others, realizing this is something they can't cure, don't get excited about it. It's a relatively rare, cureless, often chronic, orphan disease. The statistical risk of a devastating event is really low, so they don't think of it as dangerous. (But, when it's you or your family member, that low statistic is now 100%. Scary as hell.) The drug companies can't make enough money off it to really drive vigorous efforts to develop treatments and explore a cure. I'm sorry to say I don't think you'll find any increased interest in those who've disappointed you. This forum, our great docs, and a couple of educated friends were really what I had to rely on. Rest assured that folks here care, and want to know what you have to say.
Norma

Sally:

Maybe they sense your anxiety and it's their way to try to help you calm down. It may seem insensitive, but if it's coming from two doctors, maybe they just want you to see that your counts have been medically safe.

I know I'd much rather not see concern in the eyes of my doctors and family. That probably means there is something to be really worried about.

Autoimmune disorders don't get the recognition they deserve, that's for sure. There is a lot of suffering that occurs with them that goes unseen. I think though that there are different degrees of seriousness; some are much worse than others. Not that ITP isn't serious, it can be, but it is usually one of the manageable ones.

Thanks Sandy. However, I don't really feel that my anxiety levels explains their lack of awareness and interest in ITP.

I think of it as 4 doctors.

None of them were aware or showed any interest in the existence of this web-site.

The haematologist did not mention or test for any thyroid involvement which I think is surprising considering my age and symptoms.

If they felt I was anxious there was no discussion to this effect - no suggesion that I should have medication or counselling! In fact, there was general acceptance and understanding of my fear of becoming 'a number' in the health care system. I was given the latest medical diagnosis "White coat syndrome". My blood pressure usually goes up when I have to visit doctors :blush: . I had the first normal BP on my last visit, to the relief of my GP, who was beginning to doubt me when I'd tell her that it's usually alright.

I feel a lot more impowered now and less anxious about ITP since listening to the stories of people on this site and making positive health decisions.

I'd really like to see ITP awareness increased, particularly here, and at first contact points, like oncology departments - ?? a brochure. I imagine that this strategy has been discussed. Would be very interested in what the consensus was.

I know I'm new to this game but not to medical matters. I really do sense an incredible lack of awareness and ignorance of ITP and I don't believe this is conducive to positive health outcomes (excuse the jargon).

sally,
I agree with what you are seeing with doctors, I see it a lot too. If you tell them you read something online, they assume it was useless when it might very well have been a peer reviewed medical journal article like they are supposed to be reading. A subset of doctors welcome the educated patient, those are the treasures to find. Another big problem I see is the effect of specialization. Doctors are only interested in the one body part or system they are 'in charge of'. So my hematologist doesn't have any interest in non-blood symptoms, my rheumatologist similar, etc. So who sees the big picture - we have to do that ourselves somehow.

I do see how what I'm asking for is contradictory - I want my doctors to be current with research but not just in their narrow area of specialty. It's impossible, there is too much information out there. So at least, they should consult, and be open to new information from reliable sources.
Erica

Sally:

I agree with that - when I was first diagnosed, I took credible articles to my doctor. He made comments about "not believing what you read on the internet" and he'd hand them back to me. In time though, he finally did start listening when the suggestions I gave him turned out to be true after his research. I told him about the H. Pylori connection...he tested me and after that told me that he tests all new patients since I'd brought that to his attention. He also thought Rituxan could only be used after splenectomy. I disagreed, he researched, and I ended up being his first ITP Rituxan patient. There are a few other things, but the point is he began to take me seriously. We learned from each other.

Back when I was diagnosed (1998), we (the Forum) always talked about ITP awareness. Some of us went on a crusade to make ITP well known. We wrote to TV shows (such as Oprah) and really tried to make it public. No one was interested. I guess I just got used to it. If it weren't for Joan Young who founded the PDSA and the others who carry it on, it wouldn't be nearly what it is today. ITP really has come a long way, maybe not with public awareness, but with funding resources and research and patient awareness. Is it really so important that everyone knows what it is? There are thousands of unknown disorders. I know I don't know of all of them. Would I want to? I would have loved to see an ITP brochure in my doctors office at one time, but which blood disorders get that attention?

Erica is right about the specific body parts. All of my doctors are the same way. If it doesn't affect their specialty, they are not interested. That's what happened when we became a world of specialists. The GP is a sort of catch-all, but even they have limited knowledge.

The good thing is that we, the patients, have unlimited access to knowledge and can be our own advocates. It's too bad it has to be that way, but after doing it for so long, I actually prefer it. Patients have more power now than they ever did as far as options go. The thing is, you have to push for what you feel you need.

Speaking of specialties, I just remembered this story. A few years ago, when it was discovered that I had APS antibodies, I needed a doctor to monitor it. My rheumatologist ran the test and had the results, but he was moving across the country and I needed a new one. At my first visit with the new rheumatologist months later, I brought it up with her. She told me that monitoring APS was not her job, my hematologist would do that. Okay, I waited a few months until my hematologist appointment and when I brought it up, he told me that wasn't his area - the rheumatologist should do that. Back to the rheumatologist I went, and mentioned it again.

By this point, I wasn't sure if I was amused or irritated. Neither doctor claimed it was their area. To me, it was a no-brainer. Blood disorder = hematologist. But the hemo flat out told me that he didn't know enough about it to be any help. That honesty made me realize that if he wasn't familiar with it, I wouldn't want him to monitor it anyway. He also claimed that it was a job for the rheumatologist because it was mostly Lupus-related.

Anyway, I left off with the rheumatologist. She was rolling her eyes but decided to end the charade and gave me the name of a hemo who did specialize in APS. I got an appointment with him and he was the ticket. I now have two hematologists. Passed back and forth like a hot potato. There are some things that fall into no category - who'd have thought that?

I also can understand the lack of interest in the different docs. How could they possible have current knowledge in every area of medicine though? But....they sure should show an interest in what ever it is that ails you and give you some support and info on who you contact for help. As for family that appears to not show any interest...I dunno. I would be offended by that. If there really is no medical help they can give you, they should at least show an interest simply because your family! I must have gotten excellent doctors because either of them will me with whatever I need. Example, at one of my hemo appts I mentioned that my urine was dark and cloudy, they did a text for UTI and sure enough it was there, he prescribed me antibiotics and all is well. And my regular doctor was the one who released me when I had to stay in the hospital overnite becasue my count was only 4 and the emergency doctor admitted me for a platelet transfusion! Hoping it works out for you, and we're here anytime you want to vent!

We are also blessed to have hematologists who will deal with other general issues while we are there (flu shots, sore throats), so we don't have to run around to multiple docs. Perhaps it's because they're pediatric hemas, but I prefer to think they're just wonderful, practical, people. They understand that we want all meds and conditions run through them, because they've become essentially my kid's primary docs, and because they're treating her most important issue. When she became terribly ill with what turned out to be an infection and reactive arthritis, and the GP and ER had gotten it wrong, I turned to them for assistance, and they pulled together the right team. I also would have liked to have received a brochure, or at least a reference to this site when we were initially seen by the hematologists. I realize they can't fill the waiting area with brochures from every condition they treat, but a list of resources to hand to the patient may be helpful. I found this site in my desperate Googling for info on ITP, and I am so glad I did. I also find it frustrating that there's no "specialist" for autoimmunity. (Rheumatologists are the broadest, but they don't cover all of the autoimmune spectrum.) They all treat only the area of the body the thing is affecting at the moment. That said, until autoimmunity is more fully understood and generally treatable, we all must go to the specialists for the area of the body affected. Seems there's not a better way to go just yet.
Norma

A heartfelt thank you for all your replies.
Most of you i sense are now well informed, confident and comfortable with asserting yourself with doctors. I don't think that is the case with most people, especially when first diagnosed with a chronic immune disorder.
Those of you who have well informed doctors are blessed; needles in haystacks I imagine.
Thank goodness for the internet. I used to avoid computers but now roles have been reversed in our little family.
I didn't become a member on this site for at least 2 months after initial diagnosis because of fear that it would increase my anxiety.
What has really helped is hearing how people can live 'normal' lives on incredibly low counts, sometimes with no symptoms.
I'm hoping this knowledge has bought me more time to try to heal myself, or at least try to be able to manage my platelet numbers through life-style changes. I appreciate that some people may not want to make changes, or are not in a position to, but I have totally embraced the changes and am honestly enjoying them. An ITP diagnosis has validated my desire to adopt changes which previously my partner could not see the need for. I am blessed with a supportive mate whose caring side has really come out since 'Seeing the Numbers'- a male thing :lol:
With all the wonderful support from You Mob (endearing aussie slang) I'm hoping I'll be more relaxed when I see my doctor BIL this Christmas and see if I can stimulate his interest in the topic.
Best wishes, Sally