jaztsd
10-24-2006, 01:03 AM
I've been heariing a lot lately about a controversial illness called Morgellons. It causes open sores on the skin, itching, odd growth of tissue, and weirdly, fibers that come out of the open sores. There have been suggestions about may cause it, and some doctors don't believe it's a real issue. Many sufferers also report neurological symptoms that are new.
The thing I'm getting from the reports are that many Morgellons sufferers feel very alone, and think they are going crazy, in fact, some doctors have told them exactly that.
I do not have any symptoms of this illness, nor does anyone I know. I just think it would be a nice place for people who do have it to come and talk freely.
This site, http://www.morgellons.org/ has good info, and is worth looking at. However, even this site, the main site about Morgellons that doesn't judge, has no forums. I think it would be nice for folks with Morgellons to be able to talk to folks who will not judge them, or tell them their disease is psychological, or feel so alone. Perhaps we'll even get a link from the Morgellons site mentioned above.
When I was diagnosed with TN, which is rare, but certainly accepted as a real illness by the medical community, I felt very alone, no one who doesn't get these pains can know what they are like. These forums have been a huge blessing in my life, and it's also a place where I don't get responses like, "Well, my mom has back problems, but she doesn't go around complaining all day," "Why don't you just take an advil," and, "I know exactly how you feel, I get the worst sinus headaches." The first comment was from my ex-husband, while we were still married, and this is with a medically defined illness (for which I underwent surgery) that people often don't understand. I can only imagine how much harder is it for people who have an illness with no formal definition, who some even feel is a psychiatric issue.
I doubt we'll get a lot of traffic in this room, but if two people show up, and their lives are made better for doing so, I think that's a good enough reason. It might also be a place where people having some of the described symptom can go, ask questions, get advice on what doc to see, etc...
I'm not sure why I feel so strongly about this, but I do know it's a huge issue for people who have it, and there are good reasons for opening such a room.
Thanks so much,
Jan
The thing I'm getting from the reports are that many Morgellons sufferers feel very alone, and think they are going crazy, in fact, some doctors have told them exactly that.
I do not have any symptoms of this illness, nor does anyone I know. I just think it would be a nice place for people who do have it to come and talk freely.
This site, http://www.morgellons.org/ has good info, and is worth looking at. However, even this site, the main site about Morgellons that doesn't judge, has no forums. I think it would be nice for folks with Morgellons to be able to talk to folks who will not judge them, or tell them their disease is psychological, or feel so alone. Perhaps we'll even get a link from the Morgellons site mentioned above.
When I was diagnosed with TN, which is rare, but certainly accepted as a real illness by the medical community, I felt very alone, no one who doesn't get these pains can know what they are like. These forums have been a huge blessing in my life, and it's also a place where I don't get responses like, "Well, my mom has back problems, but she doesn't go around complaining all day," "Why don't you just take an advil," and, "I know exactly how you feel, I get the worst sinus headaches." The first comment was from my ex-husband, while we were still married, and this is with a medically defined illness (for which I underwent surgery) that people often don't understand. I can only imagine how much harder is it for people who have an illness with no formal definition, who some even feel is a psychiatric issue.
I doubt we'll get a lot of traffic in this room, but if two people show up, and their lives are made better for doing so, I think that's a good enough reason. It might also be a place where people having some of the described symptom can go, ask questions, get advice on what doc to see, etc...
I'm not sure why I feel so strongly about this, but I do know it's a huge issue for people who have it, and there are good reasons for opening such a room.
Thanks so much,
Jan