A Glimpse Of What It's Like Dealing With Photosensitivity - Daily
In my daughter's early highschool years she attended a school dance , we were not told that strobe , laser , flashing lights could possibly cause a seizure . My daughter went to a school dance with her best friend , the light csught her eyes, she had a seizure . My daughter's best friend & parent brought her home , we notified my daughter's neurologist who ordered an EEG , which determined my daughter's seizures had changed , she was diagnosed Genetic Generalized Epilepsy & Photosensitive. A whole new health care plan & medication plan was put into affect & it felt like we were back to the drawing board all over again , re learning everything. This included translition lenses to try & protect her eyes from lights that could potentially cause a seizure , a lot of trial & error , figuring out which types of laser , strobe , pyrotechnic, sun shining through trees & much more could possibly harm her .
As a caregiver and a mom to someone who fights Epilepsy & takes medication everyday , i find my daughter extremely tough , she is very quiet & doesn't say much unless she needs to so , when she was originally diagnosed at age 8 i became her voice , i advocated & fought for her , i was called a helicopter parent because i was so protective, i'm not going to lie , i was and still am protective , a little more relaxed as she got older because in her younger years she coukd not talk during a seizure , she described it as having a bandaid ripped off her tongue . Now since her seizures have changed in her early teens ( described above ) , she is more able to talk during a seizure & can sometimes write down in her Epilepsy journal at the same time , it all depends how she feels during that time .
Please note :
- i can only speak as a mom & caregiver .
- my daughter can only tell her journey of what it feels like to have Epilepsy .
- there are over 40 different types of seizures, your story may be similar to another but no two seizures are the same .
Even though my daughter can let me know how she's feeling , i will always be her voice . Don't judge me on how i was while my daughter was having seizures because you have no idea what i had to deal with to help her pull through , not many saw her actually have a seizure but plenty sure had opinions. There were others who wanted to help , wanted to learn which was hard because we were still learning ourselves , for example ; trying to figure out what events my daughter could attend & what she needed to avoid for her health , a simple family gathering if there were flashing Christmas lights , had to be avoided , Fireworks celebrations had to be avoided , concerts unless daytime outdoor had to be avoided , sporting events pyrotechnics she would have to cover her eyes with towel , coat , hat or just not attend all together , while her younger sister who was not photosensitive could attend , imagine how that would feel ? You learn to work with what you are given & move forward , even today we are still cautious & my daughter is more vocal each day as to her needs & seizure triggers , this did not happen overnight , it's a learning process .
We try to look at what she can do & are aware of what she must stay away from , that includes canceling get togethers , which others do not understand no matter how often you try to explain it . It's exhausting , but my daughter's health must come first .
This would also be a good time to discuss, Pre - event Photosensitivity warning displayed at sporting events, concerts , gaming devices , YouTube , tik tok , twitter , facebook , Netflix , Disney + , tv shows , nightclubs , bars , school dances etc ; so that people who may be photosensitive and their families can take necessary precautions to avoid triggers that may cause a seizure caused by flashing , laser , strobe lights & pyrotechnics .
The warning can be as simple as a visible sign at a said event such as :
( example : ) -> WARNING, This event , tv show , fireworks etc. , may have flashing lights that could possibly cause a seizure to someone who may be photosensitive , those little steps ( signs displays , pre game on pokemon go) is just a couple of examples that could help keep that said person safe & aware of their seizure trigger in advance to help them make the choice whether they should take part or stay away from . Acessibility for All , including those with Epilepsy . Invisible disabilities are hard to detect but you the creator of such events could make a huge difference to those who deal with photosensitivity daily .
To those creators who have already started putting warning cautions up around photosensitivity such as Disney + ( some movies ) , Twitter ( flashing gifs ) , Nintendo Switch ( some games ) , i'm sure there are more .. i want to say Thank you , you have made accessibility to those with photosensitivity a bit easier due to the cautions you have put in place to possibly prevent a seizure. Let me say this as a mom & caregiver to one who is photosensitive , it is a start but much more awareness & photosensitivity warnings are needed globally !
Transition Lenses ( for glasses ) to help block out light , transition lenses are great except they transition very slowly when you change from a light to dark setting or dark to light , my daughter has a hard time with this , as her eyes then also need time to adjust accordingly. Something to consider if you're needing or interest in getting them .
What is Photosensitivity?Photosensitivity describes a sensitivity to flashing or flickering lights , usually high intensity , which are pulsating in a regular pattern. Many people are uncomfortable when exposed to such lights , but people who are photosensitive can be triggered into seizures with them .
Who has Photosensitive Epilepsy?
It is estimated that fewer than 5% of peoples are photosensitive. In addition, there are an unknown number of persons who are photosensitive who have as yet not had a seizure.
My source for Photosensitivity information was the website of Canadian Epilepsy Alliance of Canada .
https://www.canadianepilepsyalliance.org/about-epilepsy/types-of-seizures/photosensitive-epilepsy/
If you or a loved one or friend is in need of support, please reach out . You're not alone <3
signed Lorrie
June 19 , 2021
The more we educate ourselves, the more we can educate others .
UNDERSTANDING PHOTOSENSITIVITY
Not everyone who experiences seizures is photosensitive , studies say only 3-5% of people or persons with Epilepsy may experience seizure triggers due to flashing lights & or image gifs ., and or videos , this includes on social media ( Twitter, Facebook, Instagram, tiktok, Youtube , live sporting events , concerts, fairs , fireworks , christmas displays , halloween displays , sun shining through trees while in a moving vehicle can act as a strobe light , emergency vehicle flashing lights , mall displays , store displays and sooo much more .)
It`s important to learn these possible seizure trigger tips to keep those who can be affected , safe. Photosensitive Epilepsy will affect each person differently depending on the sensitivity level of that person & the intensity of the flashing , strobe image, display , live event .
Steps that a person can take include:
- staying indoors
- avoiding exposure to direct sunlight or staying in shaded areas when outdoors
- wearing wide-brimmed hats and fully covering the skin with densely woven clothing
- using broad-spectrum sunscreens with an SPF of 50 or above.
Some chemicals contribute to sensitivity to the sun. These can cause two different types of photosensitive reactions: phototoxic and photoallergic.
Phototoxic
Phototoxic reactions are caused when a new chemical in your body interacts with UV rays from the sun. Medications like doxycycline and tetracycline, for example, are the most common cause of this type of reaction.
The result is a skin rash that looks like a severe sunburn, which usually develops within 24 hours of exposure to the sun.
Photoallergic
- certain antibiotics
- chemotherapy drugs
- diuretics
Photoallergic reactions can develop as a side effect of some medications. They can also arise from chemicals found in beauty products and sunscreen.
These types of reactions to the sun tend to take a few days for a rash to develop after sun exposure.
What are the symptoms of photosensitivity?
Symptoms of photosensitivity vary from mild to severe. The most common symptom is an exaggerated skin rash or sunburn. Rashes may or may not cause itching. In some cases, a sunburn can be so severe that blistering develops. Weeping of your skin and peeling can also occur in severe cases.
The amount of sun exposure required for a reaction varies greatly. For some people, very little sun exposure can cause a rash or burn, while for others, prolonged exposure will bring about a reaction.
What causes photosensitivity?
- Photosensitivity is a common side effect of various medications, including
- certain antibiotics
- chemotherapy drugs
- diuretics
Some medical conditions can also cause photosensitivity. These include:
Lupus erythematous
Lupus is a connective tissue disease. Red patches, lumps, and purple spots can develop on areas of your skin exposed to the sun.
Polymorphous light eruption
People with this condition can develop an itchy rash when they are exposed to the sun. As sun exposure continues and UV tolerance increases, symptoms generally appear less often. Women are two to three times more likely than men to develop this condition.
Actinic prurigo
People with this condition may develop red bumps after sun exposure, which can turn into scaly patches. This disorder can occur year-round, even in winter when sun exposure is less likely.
The above info i found on Healthline.com
Some medical conditions can also cause photosensitivity. These include:
Lupus erythematous
Lupus is a connective tissue disease. Red patches, lumps, and purple spots can develop on areas of your skin exposed to the sun.
You can learn on how to help you or your loved one who may be Photosensitive by talking to your personal healthcare provider .
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The link below is a cbc radio 📻 Vancouver #OnTheCoast interview my daughter and i did with interviewer Gloria Macarenko on Living With Photosensitive Epilepsy ⬇️
* New link 🎧
https://on.soundcloud.com/1YcYA #soundcloud
blog post July 9 , 2023
- Lorrie