I have no experts or tx here in NE Iowa usa
You guys must be in England because you are way ahead of the diagnosis and treatment here. I have lost mobility in both legs. My feet are super red and painful. I am so depressed about my lack of care and doctors here. Both legs are huge and pumps and compression haven't worked. So I am desperate to find experts in this field. Why are the doctors so lacking of knowledge about the lymph system here in the states? I keep praying for some help🙏
There are members of this site from your side of The a Pond who post here regularly (this site is based in London). You could use the Search option (magnifying glass icon, top right) and put Help in USA as a prompt, there are several sites linked to organisations in the US where you could seek guidance/advice.
Apart from that, if your feet are super red and painful, you might Need to see an MD urgently, to rule out infection such as cellulitis.
Thank you for your help😊
Hi ironkitten. I live in Lincoln NE and there are some great people at SE NE Cancer Center. They have about 3 OTs that specialize in lymphodema. Tracy Bender is awesome!!! I also have it in my legs but caught it right after chemo and surgery. Let me know if you need more info!
Hi ironkitten, go to the lymphatic education and research network site. Perhaps someone in the Illinois chapter can help you? You probably need a Facebook account to connect with that group. lymphaticnetwork.org/
Hi there. I am also in NE Iowa. I have heard good things about Dr. Wei F. Chen, MD at UIowa Hospital. I am hoping to get to a healthy weight to be a candidate for LVA. I have lost 63 lbs so far!
In North Liberty there is a Pilates studio that has a massage therapist certified in lymphatic massage. I don't have anyone in CF that is similarly certified other than my therapist. But she doesn't do hour long massages. She just got me under control a few years ago and then is my touch stone when I have questions.
Good luck!
Dr Chen recently left the U of Iowa for the Cleveland clinic. However, Dr. David Chang is at the U of Chicago. I have late onset primary R leg lymphedema, or it may be late onset secondary (caused by pregnancy) - its still unknown. There isn't nearly as many resources here in the states, but this blog has been incredibly helpful! I have a surgical consult in Chicago in a month, i am in WI and he is the closest option. Good luck!
Great suggestions offered for US information. Thank goodness resources are becoming more available. I know, hard to believe when you cannot locate any, but once you do, you will increasingly become a strong advocate for yourself. Self advocacy is paramount in the US, as perhaps everywhere. Sometimes you feel as though you are battling every inch! I know from experience. Chocolate-e-clare mentioned LERN, lymphaticnetwork.org/living.... LERN's site is quite large but worth the effort to navigate. Also Lymphnet.org is another resource too-they also host a message board. Best of luck.
Chen (formerly Uof Iowa) @ Cleveland Clinic is amazing. It worth the trip to see him. Good luck!!
Weight lose and lyphoedema
Caving in
so fed up with all this !
There is hope and help
