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I got 99 problems, but …

This is difficult, but I need to share what’s going on with me or these so called “problems”.


I want to address synonyms for both deseases, because they are both very complex and incorporate many things. So, you might have heard them before, maybe, in different verbiage.


Senior Loken Syndrome may also be called:

-juvenile nephronophthisis with leber amaurosis

-renal dysplasia and retinal aplasia

-renal dysplasia-blindness, hereditary

-renal-retinal dysplasia

-renal-retinal syndrome

-Loken-Senior syndrome

-SLS


Retinitis Pigmentosa may also be called:

-progressive pigmentary retinopathy

-rod-cone dystrophy

-RP


To start it’s Retinitis Pigmentosa (RP) and Senior Loken Syndrome (SLS), which branch out in combination of different things for me. Everyone experiences different phenomenons and progresses at different rates.


I have:

-Nighttime Blindness

-Photophobia

-Color blindness

-Dyslexia

I have all these conditions in different stages, along with losing a part of my peripheral vision and part of my central vision. Which will continue to worsen and my vision will continue to keep changing.


These are very common with RP and SLS just contributes to my vision loss as well.


Although, Senior Loken Syndrome doesn’t just affect my vision, it affects my kidneys as well. My first ultrasound to see where my kidneys are and how they are doing is set for February 19th of this year. Which will definitely decide which direction I go from there. My blood work for my kidneys did come out on the better side, which is extremely imperative for my health and longevity. So, until I have my appointment, an excerpt from NORD (National Organization for Rare Diseases) will explain what happens or what could happen. I didn’t realize I was living with a lot of issues that are kidney related and didn’t know the issues could be caused from Senior Loken Syndrome.


“Nephronophthisis or the onset of nephronophthisis; is characterized by fluid-filled cysts that form in the kidneys and eventually worsen. The kidneys can form cysts that can cause increased urine production (polyuria), weakness and fatigue, and excessive thirst (polydipsia). The kidney problems are present at birth at times, or symptoms will develop very gradually before becoming apparent.” (NORD)


“Renal ultrasound scans can help in the diagnosis with showing kidneys of normal size, with two possibly different types of cysts. As the disease progresses, so do the cysts and how prominent they are. Progressive failure of kidney function occurs as a result of degeneration or loss of function of the small collecting tubes in the kidney. This can cause chronic interstitial nephritis and uremia.” (NORD)


“Chronic interstitial nephritis is a kidney syndrome in where the tissue of the kidney become inflamed and structural changes occur. Eventually the patient may have symptoms such as nausea, vomiting, weight loss, fatigue, anemia and ultimately kidney failure.” (NORD)


All of the above excerpts are from the NORD website to explain what could be or could happen to the kidneys with this disease. (https://rarediseases.org/rare-diseases/senior-loken-syndrome/)


There is always hope and hopefully my ultrasound coming up will have some good news for the meantime.





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