What do patients with smell loss want?

I use my FB page to update my readers with the latest in research, to help them understand smell training, and to encourage discussion about how their smell loss is progressing—or not. We are an ever growing number, as of today 454 members. I see our role together, the Facebook Smell Training Group, as a collective body of information about smell loss, almost as important as my original role of smell training “teacher”. I feel that our shared experience of this most confounding and under-researched condition could inform the way research is conducted as well as the way health care providers respond to us. To quote Sharon Terry, an inspirational TED speaker and founder of the Genetic Alliance: “There are no easy answers, but together we have the answers in us”.

Recently I raised a question for the members of the Facebook group. What would you like to see, I asked, to help you in coping with smell loss? What resources do you wish you had? Where do the problems lie? The responses make interesting reading. Here is a selection:

JKG

We need ways to politely but firmly get our doctors' attention and get them to take us seriously. Perhaps some brief but professional written information we could give them.

MW

[we need]…a one stop shop for us so that we can be directed into smell training( if appropriate) reassurance that we are not going crazy, concise and clear information about the various stages of anosmia, parosmia and any other smell disorders, dietary advice, information booklet for relatives and friends.

CG

Access to real and safe information is key - understanding the recovery process, how to speak to doctors, family members. Also safety articles (had a propane leak in my house that I didn’t smell). Lastly, access to any peer-reviewed studies and reports. When I went armed to my ENT…he was dismissive.

LM

I agree - and when we say doctors, including neurologists as well as ENTs. Also [re TBI cases, knowing that] …smell training is worth trying for all newly acquired anosmics (both TBI and post-viral). I actually know of several TBI cases with similar parosmia/recovery paths as post-viral anosmics. We even have the same parosmic aversions that many post-viral cases do, like to coffee/chocolate/anything roasted etc. For smell training, it would be awesome to be able to order kits with specific smells from a vast smell library.

EC

I feel like TBI cases are often written-off as hopeless, but I am a good example of post-TBI recovery. On the other hand, I felt like my ENT lumped me with post-viral cases and tried to treat me with prednisone which was useless to me. In general, a better understanding of post-TBI cases is what I am hoping for. It seems like all the current research excludes us as well.

LW

I’d like to see a lot more patient-advocacy, more medical research, and a much higher profile of the condition. A foundation that cares for us, campaigns on our behalf and champions our cause. The ability to speak to, and for, patients and healthcare professionals. Either by using actual patients as advocates, or by providing specialised training to HCPs in order that they can spread knowledge through the healthcare industry. Or both. Providing speakers, stalls and information at healthcare conferences. That sort of thing.

AMR

Definitely need more resources on cooking with smell disorders and coaching on how to experience food differently, more mindfully and joyfully. 

KP

I wish there was some more education for this problem and also more on tv, you see lots of problems being addressed on popular morning tv shows but I have never seen our problem addressed. I would be interested to find out if junior doctors have this debilitating problem on their curriculum? Considering there are so many of us struggling with this I cannot believe how little the medical profession know about it.

DW

I would like the medical professionals to take more of an interest in this condition instead of just dismissing us and saying nothing can be done.

WHP

I wish all GPs were more educated on the condition and…able to support…it is very depressing when you can't eat and all he wants to do is send me to a dietician

LG

It would be a good thing if all ENT-practices offered [counselling] for those of us who need it. I went to a specialised clinic this week after a smell test. The only thing they said was smell training can help but no guarantee, Goodbye! No empathy, no questions how I am coping. So yes, attention for the emotional side of the matter would be great I think.

EBR

Had no support whatsoever from doctors. Even the ENT couldn't wait to get me out of his office.

JB

Educate the doctors ... from general practitioners to ENTs. My family doctor, four university ENTs and one allergist, and all my information was collected from hours of googling and these FB groups.

BS

Googling and FB groups should not have to be our go to source, but I have still not met anyone who has lost both these senses - including any doctors, psychological or medical.

PKW

I want to feel connected with family and friends when enjoying food and fragrances of holidays and special occasions and daily living and having that piece that keeps you alive... I miss that so much.... I can no longer share in my family memories... I'm left out of discussions and the spirit of the moment

PD

I feel with what I have gone through in my life might put a perspective on the loss of smell. Out of being paralyzed or losing my sense of smell, I would choose to be paralyzed, and when I share this with people that just can’t believe it. They said they would rather not smell ... how do they know? I have experienced both, which they haven’t, and this should help doctors and researchers understand the magnitude of this issue, and importance of a cure. Their mindset is ...it won’t kill you, but it really can, this brings on suicide and broken hearts, not to mention it is a hazardous situation when you can be sitting in a room with a gas leak, poisonous food etc., and not even know it.

To read what happens to patients when they receive a diagnosis from their doctors, click here.