Re: Give money?/msg for Nina

[Guest guest]

Hi Nina,Let me clarify a bit of what I have read about the ethnicity of those who are more prone to EN. Prevalance of Sarcoidosis:

20 per 100,000 overall; 5 in 100,000 white people; 40 out of 100,000 black people; Scandinavia 64 out of 100,000 people. Inflammatory Bowel Disease--Race and Ethnicity: American Jews of European descent are four to five times more likely to develop IBD than the general population. IBD

has long been considered a predominantly white disease. The prevalence rate among whites is 149 per 100,000. Among African Americans, however, there has been a steady increase in reported cases of both Crohn's disease and ulcerative colitis. An HMO with two million members reported

hospitalization rates per 100,000 by race, over a six-year period, as: 10.2 - Whites 10.2 - African AmericansAccording to this study, prevalence rates among Hispanics and Asians were lower than those for whites and African Americans.So we suspect that genetics and environment plays a role in the development of disorders most associated with EN. I agree that genetics is the hot topic. And yes, I would love for our genetic to be studied as a group. One question that I have is why I had a chronic and relatively milder case than most with EN. If my genetics were studied and compared to those with severe idiopathic EN would the difference be discovered to treat those with the severe form and reduce the symptoms? Quite a few years ago I and some other EN group members contacted a host of American Medical Schools proposing that our EN group be the subject of a research study. I thought we would be welcomed--after all, isn't it hard to find subjects and here we were--all ready and in relatively large numbers? Well, we got turned down by everyone. And the reason? They needed money to do the research--so they suggested when we had money to come back and they could possibly help. That is when I realized that money talked. That is when I begged NORD to take us under their Rare Disease umbrella. And it it took quite a bit of persuasion to get them to take us! Why? Because EN is considered to

be a symptom of a disease--not a disease outright. And the way NORD works is that they help us find the researchers once the "seed money" is collected. $35,000 which is a pittance when you realize the expense of medical research. A research grant from NORD carries a lot of weight--and it attracts outside money to the point where corporate and wealthy donors add their contributions. Unless there is the "seed money" there is nothing to attract charitable donations from the outside. This is what we ran into. Jeff has taken part in "Grand Rounds" for PG. He has spoken to dr's and med students and made an impact on them to where they will remember PG when they see it and what he told them. I was asked to visit a med school to show my EN...however I was in remission at the time they were studying it, and so my presence was not needed. The students, I was told needed to see it flared up to identify it--but my dr. who taught

dermatology, was going to explain that there was no cure, and that SSKI was the only treatment he suggested. This was in the 80's. Believe me, it is very frustrating to know our members are suffering and there is no ray of hope on the horizon other than empathy. I don't like to ask our members for money. I'd rather share experiences and encourage people to keep looking for their triggers and live their life in the face of adversity. I am open to all suggestions, except giving up.Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!

,I couldn't agree more with your post! I have been a member for a whileAnd have been turned off by the guilt tripping for donations. I too feel we will find our own solutions.Group our job is to provide support. Period. There are new people who are struggling, PLEASE remember that and find another way to raise donations. Let's remember the goal of this group before we lose more members.Best,ML GemmillEN 1975 Sent via BlackBerry from T-Mobile

Sender: erythema_nodosum_Group

Date: Wed, 21 Jul 2010 08:51:43 -0000

To: <erythema_nodosum_Group >

ReplyTo: erythema_nodosum_Group

Subject: Give money?

Trudi, Thank you for voicing some of my feelings too. I have only joined this group recently, and this is my first posting. Joining this group is a tentative thing for me, yes, I would love to find out more about EN, especially what people are doing, have done, have read about, ect. The tone of the asking for money for the "cause" has really put me off. I've never been a member of a Yahoo group that requires money, either implicitly or explicitly. Maybe some do. I would not have joined if I had known this was the case. Saying it is not required but then laying that heap of pressure on everyone is a kind of passive aggressive thing that I have very little tolerance for. What I expected from joining this group is that I would meet people who know more about this than me, not that I would be instantly guilt tripped to give to someone's favorite organization (which I know NOTHING about). The flip side of me joining and hoping for answers

is that if I come up with something that helps this condition, or information that I think is potentially useful, I will share it with you all freely and without any obligation or implied sense that you "OWE" me. I have no faith in medical research finding the answer to this, considering the billions of dollars that have been given to cancer societies, to no avail. Why does anyone think a few dollars of "feel good" is going to further medical science? Exactly what clinical trials are proposed that need to be done? How, and by whom will they be conducted?? or will the donations just fund some Administrators to think about and possibly decide that? Because the non-profit administrator's salary is not something I can afford, and I am not interested in joining a "club." IMO, If you want to spend money on EN research, something more useful is to start your own EN research group, or become one, and buy subscriptions to medical journals in

English, Chinese, Russian, German, Spanish or French, depending on your abilities to read each, to start. Then scour them and their back issues for pertinent information. Report to the group, written essays surveying each weeks efforts at amassing more knowledge. Besides that, I consider this group of people sharing subjective experiences of what they have tried and the results of that, to be a contribution toward the body of knowledge re. EN and maybe someday it will come together into yet another journal article, with more clues for those who are seekers of a benificent truth. Sincerely, and with best wishes to you all to find your own solutions.