My friend

Hi, i'm new to the site and new to thalassemia. I have a good friend that has this condition. I have to admit until yesterday i was not aware of the name of the condition other than it had a Mediterranean origin. She is such a lovely person and she never complains about her condition at all unless i bring up the subject. This the reason i'm a bit worried at the moment though, i don't know much about her condition or how regularly she is given a health check except that she is given regular blood tests to check her anemia levels, but i'm pretty sure she doesn't receive the treatment that she deserves! I have a few questions therefore, which hopefully with your help will mean that we can ensure that she is given the help she needs so she can be happy and healthy!

The first question is: can thalassemia affect a persons eating habits? My friend doesn't eat. I mean that pretty much literally. She feels nauseous (and i believe can be sick) when she eats and therefore does not. As her friend this is sad because i know she can be self conscious about it. From what i know, she doesn't eat most of the day. She tries her best and will drink copious amounts of tea, and maybe have some soup or a bit of salad in the evening. I worry on a basic level that she's not getting all her vitamins although i know she takes supplements. She is anemic, this is pretty obvious even to me because she can tire easily especially at times of high pressure, and there are other clues. This started 4 years ago now and she says goes in such periods. I've never seen her eat a proper meal in the 4yrs i've known her. She has had lots of investigations into it including an endoscopy to look at the inside of her stomach but no dr can tell her an answer and they all simply refer her to another department. She has never had an answer and i think she has given up looking for one or at least she has tried every direction possible and all seem to come to a dead end. So i was wondering if maybe her thalassemic condition maybe causing it...although it is probable this has already been looked into and ruled out...(i say probable because of the lack of knowledge surrounding this condition by most drs means it could have been overlooked!).

The second question is: recently she has been getting sharp pains at the back of her head near the nape of her neck. She has been to the dr about this and he is finally referring her to neurology although we don't know much about what that sector of health care focuses on. I worry simply because she is prone to playing things down as she is that lovely a person that she doesn't like to complain....so it worries me slightly that she has even mentioned these headaches to me. The drs said something about bone density mass but i do not know much else other than that. I am glad it is being investigated and i trust her judgement entirely but considering the waiting list times in the nhs (UK) as her friend i just don't want anything to get worse before it is even investigated!

Thanks in advance if you are able to answer any of my questions. I look forward to learning more about this condition, and please do tell me if there is anything as a friend i can do to help. She is so amazing considering her health difficulties, she does 100x more than me on a day to day basis, i'd be totally exhausted if i was living her life and had her illness....actually i'd be exhausted even if i didn't! I love my afternoon naps!    thank you.

Helen,

Welcome and thank you for your post:)  Helen does your friend have thalassemia intermedia?  Do you know what her hg levels usually are?  I have not heard of lack of appetite in thalassemia - but perhaps others have.  I hope that her physicians are able to help her resolve her stomach related issues because nutrition is very important to her well being. 

Please let us know how her neurology tests go and the treatment plan which her physicians chose for her.  Once we know what type of thalassemia she has - minor, intermedia or major we can provide more information to you and we can also help her select some good supplements.  Do you know what supplements she is presently taking?

It also sounds like she has a very busy schedule, and with her limited food intake she must feel very exhausted.  We look forward to hearing more from you Helen. 

Sharmin

Thanks Sharmin for replying, sorry it has taken so long to get back to you, i've finally managed to talk to my friend and get some of the answers for you! First off i don't know if she has minor, intermedia or major. I posted in this part of the forum as it seemed the most appropriate based on my own limited knowledge at the time. She definately suffers from this illness although to what extent both she and I are uncertain. She thinks that she is simply a carrier so doesn't actually understand why she is anemic/ill because she didn't think that was possible, but neither of us are that clued up on genetics so perhaps it is possible! Her dad and brother both have the illness too (sorry i'm not sure how best to describe it - illness/disorder/disease??) but they do not have any symptoms. The rest of her family are fine. Her hg levels are around 10, she says, although again she cannot say for certain, but apparently her GP once told her that if it got any lower or remained as it was then they would have to consider a blood transfusion...which i didn't find out till today and is a very scary thing to contemplate! She takes iron supplements but every so often she has to stop taking these because it may cause more damage than it will be beneficial. I basically think that all the drs are doing are attempting to manage her symptoms in a very roundabout way and not really tackling the main issues! She just had her MRI scan but won't get the results for several wks. Is there anywhere in the meantime i can find more information regarding thalassemia so i can give her a copy?
She does have a very busy schedule, she works long hours and i honestly do not know how she survives through the day on her food intake. I very much doubt that she will learn the reason for her food difficulties now unless someone actively takes an interest and no drs seem to be willing to do that, it is all too easy to pass the buck!! They seem to say one thing and then a few wks later go back on what they said. Sorry i just get so frustrated at medics, they train for years and years and yet cannot provide answers to someone in need. Actually even that would be understandable...sometimes in life there isn't an answer, it is just one of those things....but the fact they have not made any referrals to a nutritionist or a therapist to see if it is an underlying aversion to foods or a reaction to times of stress that seems to just latch on or something, is really, really poor practice! Furthermore, I worry that the eating problem is only exasserbating the thalassemia symptoms by making her more anemic than perhaps she would be normally. So yeh I hope the neurologist is able to help her in some way but that remains to be seen! At least she has been assured it is not a brain tumour! I'd not thought of that possibility! God forbid.

thank you for taking the time to reply to my post, i really appreciate.