Anosmia

THIS BLOG IS ABOUT LIFE AS AN ANOSMIC - SOMEONE WITHOUT A SENSE OF SMELL. I AM A 22 YEAR OLD MA STUDENT IN LONDON AND HAVEN'T HAD A WHIFF OF ANYTHING IN ABOUT 15 YEARS. I AM WRITING THIS TO RAISE AWARENESS OF THIS INVISIBLE DISABILITY AND WILL UPDATE EVERY TIME THERE'S SOMETHING TO WRITE ABOUT.

This Anosmic

About me


My name is Jesselyn and I've been ansomic since I was probably about 3 years old. I say 'about' I don't actually have a cause for losing my sense of smell, so I can't pinpoint an exact time. Other people are born with it, or have been hit in the head hard enough to lose it. I don't remember one day realising that I couldn't smell anything, so I just have to go from the latest smell that I can remember. There has been the suggestion that I was kicked in the face as a child in the swimming pool, causing a deviated septum (that's the middle bit of your nose) which caused the inside of my nose to grow squiffy as I grew, potentially causing my anosmia.


My anosmia


To be diagnosed with anosmia, I've had a blind smells test; which is pretty much exactly what it says on the tin. The doctor held a number of different unmarked vials under my nose and I had to say what I could smell. I was later told that these included menthol and ammonia, yet I couldn't smell a thing. As there was no particular 'official' incident that could explain my onset of anosmia I've had a few tests done, such as my inner nose being examined with an endoscope and a CT scan. After this I was told that yes, I definitely don't have a sense of smell, no, they don't know what caused and it, and no, I will never get it back. Refusing to give up, after being told that there was nothing that could be done medically to retrieve my sense of smell I tried alternatives such as craniosacral therapy (which was weird) and accupuncture (which was horrific) all to no avail.


After those failed to work, I just sort of gave up and forgot about ever seeking treatment. After all, I'd been told that there wasn't anything that could be done. However, at the start of this year, I came across an article in the  newspaper:



"Sweet smell of success - A pioneering surgical unit that restores the sense of smell has been forced to turn away patients all over the country. Health chiefs say the service has become a 'victim of it's own success', with it's one surgeon, Dr Carl Philpott being overwhelmed with patients. James Paget University Hospital, near Great Yarmouth, Norfolk has the only clinic in Britain that treats anosmia, an inability to smell"
(I feel like I should now take the time to point out that I'm a university student in Norfolk and after a bit of digging around have found out that this Dr Philpott actually occasionally lectures there.) 

With this article, I definitely didn't focus on the bit about turning away patients, but concentrated more on the fact there was now actually a surgical unit that can treat ansomia. After having being told that I would never be able to smell again, here was hope that I actually could. This July (2013) I actually underwent the procedure that could potentially restore my sense of smell. Although there does not seem to be any hard evidence that it has worked, it can be a very long recovery process, so I have not yet completely given up.



So why the blog?


As I've mentioned before, there are over 200,000 people in Britain that suffer from anosmia and yet there is only 1 doctor in the whole country than can treat it. If it was any other disability I would be willing to bet a large amount of money that there would be teams of medical professionals and facilities all over the country that would have the resources to treat it. Before I came across this article I was under the belief that ansomia then was just one of those things that couldn't be fixed and thought nothing more. But now I know it can actually be fixed, it's just that the majority of doctors are choosing to do nothing about it, I've decided that so many more people need to be made aware of the impact not having a sense of smell has on your life.


And that's why I've started this blog. I hope you find it interesting and informative and please pass it along to anyone else who's got 5 minutes to spare. It makes all the difference to people like me if people can actually understand what it's like to live without a sense a smell.

7 comments:

  1. Me too. Have you had any luck with Dr. Philpott? I hate this, but feel determined to smell and taste again. The loss of smell/taste brought on some anxiety (I fainted on a subway) and I learned that rats with their smell/taste removed were diagnosed as anxious/depressed due to their loss of the familiar. Like, "I know you're my sister, but ARE YOU???" because we recognize/understand with scent. another study restored a dog's sense of smell/taste in a stem cell experiment. luckily, I can still tongue-wise taste/feel salt, sugar and tangy stuff like ginger (whoo-hoo!). A friend recently called me "the opposite of Helen Keller." Wishing us healed, cured, blessed... and hoping we don't smell too bad in the meantime.
    love,
    sha

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    Replies
    1. Hi!
      Sorry for the delayed reply, I've just been super busy with going back to university. I've had a bit of luck with Dr. Philpott (which I have now addressed as I have FINALLY) updated! I completely understand what you're saying and I wish you much luck in the future and hope that something can be done!

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    2. Hello,

      I'm wondering if anyone has sought out the help of Dr. Henkin of the Taste and Smell Clinic in DC?
      As far as I can tell, he is the only Dr. working with a drug called Theophylline that can reverse this condition in most people. I have found a couple of people who speak highly of him, getting 80% return of smell and taste.
      I'm doing further research on him.

      I'd rather focus on treatments, rather than learning to live with it.
      __._,_.___

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  2. Dear Jesselyn
    Thank you for you blog which I really find interesting !
    I am using the post section to send you this message since I did not find your e-mail address.
    I am a French entrepreneur specialized in Nano and Biotechnology and I am just starting a new company that aims at developing an electronic nose.
    As you may know there are many kind of e-nose most of them ending up being gaz analyzer for professional use.
    In the case of my company, there would also be one professional application (perfume control) but I am also very keen on developing a portable device able to give basic information for anosmic « patients »
    As I am currently working on the determination of the future specification of this device, I would need to get in touch with you and, or other member of your web community to better understand your needs.
    Would you be interested to help me on this project ?
    Very kind regards
    Tristan Rousselle
    Grenoble / France
    contact : Tristan@nthera.com

    ReplyDelete
    Replies
    1. Tristan, I am very interested in a device that could smell for me.

      Delete
  3. I had a great sense of smell for my entire life, I even smoked for 25 years and after I quit it got even better, then it happened, a long cold, I had never been so stopped up in my life. When it ended I had no sense of smell. I didn't go to the doctor for the long almost 3 week cold, which was a mistake, I was told that cold's don't last that long. The prognosis was that there was help but the it coming back or not was not predictable. I went on a nasal steroid and was instructed to take alergy medicine every day. I did so and it I got a faint sense of smell back over time.

    People really don't understand how hard this is. It is infuriating to hear people diminish this loss. I had a friend who had issues with her cat urinating on things and she actually said "I am not like you, I can smell, it is worse for me". OMG whatever. And the classic "well that can be a good thing sometimes", Ugh. My doctor even said that. I told him under no uncertain terms was this state better in any way.

    I am somewhat of a success story and I am sharing this for people like me, or maybe others, I never really lost my sense of taste, which is unusual, and gave my doctor hope that I would recover, and I had a great sense of smell before, also making me a good candidate for recovery. I researched natural remedies and tried them all.

    Castor oil - Did not notice huge improvements, but some, and I did not stop this until it started to burn. I still apply weekly with a q-tip in each nostril. A light amount.

    Garlic - About the same result as Castor Oil, some improvement.

    Essential Oils (smell therapy) - Have noticed the most improvement and feel like I am coming around, I have been picking up odors more frequently good and bad, I smelled the cat liter which is super important, only sufferers understand that. I smelled rain.

    I don't think it is effective for everyone but I will say this, those who don't have it do not understand the pain and suffering and sadness associated with loss of smell. You can't smell you lover, your house, the rain, or a fart. It is very hard to explain the actual pain of it to anyone. No one would tell a blind person "well at least you can't see puss coming from a giant boil on Youtube", it's cruel. Anosmia sufferers need each other.

    Thank God someone cares. Kudos to the one Doctor who is helping those not as fortunate as me. I actually got a whiff of rain the other day. I will keep doing what I am doing and hope for more improvement.

    Thank for Listening and posting this.

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  4. I hit my head on September 1, 1990 and have not been able to smell a single thing since. I have been dealing with this for 26 years now. Once I realized I was not going to gain back my sense of smell, I started working on accepting it as my new normal. Since God allowed this situation in my life and it obviously wasn't going away, I decided to accept it. What good would it do me to fight it?! I just chose to put the negative behind me and not be miserable. It took me awhile to get to a place where I didn't think about it constantly, and I can honestly say that that, even now, not a day goes by that it is not brought to mind, but accepting it and learning to live with it has given me the ability to live a happier life.

    ReplyDelete