Dent's Disease
What is Dent's Disease?
Dent disease is a rare X-linked recessive, chronic kidney condition found almost exclusively in males. The severity of the disease and the specific symptoms can vary. Females, who can be carriers for the disorder, can present with mild manifestations including low molecular weight proteinuria (increased leakage of small proteins in the urine) or hypercalciuria (high urinary calcium levels). Carriers may also be more likely to have a kidney stone, but this is not yet established for sure. Female carriers have a 50% chance of passing the altered chromosome to their child. If the child who received the Dent gene is a male they will have Dent disease. If the child is a female they will be a carrier (since they will have another X chromosome from their father). Males with Dent disease most commonly leak large amounts amounts of low molecular weight proteins in their urine. Affected males also most often have hypercalciuria (elevated urinary calcium). Dent patients can develop kidney stones or a more diffuse kidney calcification called nephrocalcinosis. Dent patients are at risk for chronic kidney disease, and some require dialysis or kidney transplantation later in life. However, some Dent patients will instead have very mild manifestations throughout their life. Because many of these findings can be asymptomatic, especially the chronic kidney disease, it is important that Dent patients are followed by a physician that understands the disease.
Two forms of Dent disease exist (Type 1 & Type 2) that that are caused by changes in 2 different genes called CLCN5 (Type 1) and OCRL1 (Type 2). OCRL1 mutations can also cause Lowe syndrome, which in addition to kidney problems is also associated with intellectual deficits, elevated muscle enzymes, and cataracts. It is not clear why patients with Dent type 2 have mostly renal problems but not the other systemic effects, or if they occur they are mild. For example cataracts associated with Type 2 Dent disease are mild and usually do not affect vision.
Synonyms
- Dent disease 1
- X-linked recessive nephrolithiasis with renal failure
- X-linked recessive hypercalciuric hypophosphatemic rickets
- Idiopathic Low-molecular-weight proteinuria with hypercalciuria and nephrocalcinosis
- Dent disease 2
Dent disease is a rare X-linked recessive, chronic kidney condition found almost exclusively in males. The severity of the disease and the specific symptoms can vary. Females, who can be carriers for the disorder, can present with mild manifestations including low molecular weight proteinuria (increased leakage of small proteins in the urine) or hypercalciuria (high urinary calcium levels). Carriers may also be more likely to have a kidney stone, but this is not yet established for sure. Female carriers have a 50% chance of passing the altered chromosome to their child. If the child who received the Dent gene is a male they will have Dent disease. If the child is a female they will be a carrier (since they will have another X chromosome from their father). Males with Dent disease most commonly leak large amounts amounts of low molecular weight proteins in their urine. Affected males also most often have hypercalciuria (elevated urinary calcium). Dent patients can develop kidney stones or a more diffuse kidney calcification called nephrocalcinosis. Dent patients are at risk for chronic kidney disease, and some require dialysis or kidney transplantation later in life. However, some Dent patients will instead have very mild manifestations throughout their life. Because many of these findings can be asymptomatic, especially the chronic kidney disease, it is important that Dent patients are followed by a physician that understands the disease.
Two forms of Dent disease exist (Type 1 & Type 2) that that are caused by changes in 2 different genes called CLCN5 (Type 1) and OCRL1 (Type 2). OCRL1 mutations can also cause Lowe syndrome, which in addition to kidney problems is also associated with intellectual deficits, elevated muscle enzymes, and cataracts. It is not clear why patients with Dent type 2 have mostly renal problems but not the other systemic effects, or if they occur they are mild. For example cataracts associated with Type 2 Dent disease are mild and usually do not affect vision.
Rareshare would like to acknowledge Dr. Lada Beara Lasic, Assistant Professor of Medicine, Division of Nephrology, NYU Medical school and Dr. John Lieke, Professor of Medicine, Mayo Clinic, for reviewing this content.
At least 250 affected families have been reported to date with Dent disease. Dent disease Type 1 is more common than Type 2. Rare disease prevalence and incidence rates are difficult to accurately determine because of frequent misdiagnosis, or because people often go undiagnosed or unreported.
| Name | Abbreviation |
|---|---|
| Dent disease 1 | Dent disease |
| X-linked recessive nephrolithiasis with renal failure | Dent disease |
| X-linked recessive hypercalciuric hypophosphatemic rickets | Dent disease |
| Idiopathic Low-molecular-weight proteinuria with hypercalciuria and nephrocalcinosis | Dent disease |
| Dent disease 2 | Dent disease |
Mutations in the CLCN5 gene can give rise to Dent disease 1, whereas the OCRL gene causes. Dent disease 2. Both genes are important for the normal function of the proximal tubules, the kidney structure where the filtration and reabsorption of water and minerals takes place. Disrupting these genes will disrupt the normal function of the kidney and give rise to symptoms of this disease.
Dent disease is inherited in an X-linked recessive pattern. Both genes associated with this condition are located on the X chromosome, which is one of the two sex chromosomes. Females have two X chromosomes and males have one X and one Y chromosome. The altered gene is passed on from a mother to her son. Women with an altered CLCN5 or OCRL gene usually do not show any symptoms of the disorder, most likely due to their second X chromosome (with an unaltered form of the gene) compensating for the altered gene on the other X chromosome. Sometimes, female carriers can develop mild disease manifestations. In males (who have only one X chromosome), one altered copy of either of these genes in each cell is enough to cause the condition. A characteristic of X-linked inheritance is that fathers cannot pass X-linked traits to their sons, since fathers pass on a Y chromosome (and not an X chromosome) to their sons. Affected males will pass on the altered gene to all of their daughters, who will thus be carriers for the disorder.
The specific disease manifestations vary greatly from person to person, even among affected individuals within the same family.
The most common manifestations are proteinuria (elevated levels of proteins in the urine, especially of low molecular weight or small proteins) and hypercalciuria (elevated levels of calcium in the urine).
Some individuals can also develop deposits of calcium in the kidney (nephrocalcinosis), and more rarely kidney stones. People with kidney stones can experience painful urination, abdominal pain, a block of the urinary tract and recurrent urinary tract infections. Affected patients may also develop low levels of potassium, phosphate, rickets and decreased growth. Many affected patients will develop a progressive loss of kidney function and may need kidney replacement therapies like kidney transplantation or dialysis.
People with Dent disease type 2, in addition to these symptoms, can also experience mild intellectual disability, elevated muscle enzymes and cataracts without vision problems.
The diagnosis of Dent disease can be strongly suggested by finding elevated low molecular weight proteins in the urine (usually over 5-fold the normal range) together with other typical findings. Commonly measured low molecular weight proteins include β2-microglobulin, α1-microglobulinand/or retinol binding protein (RBP). Additional findings consistent with Dent disease include: excessive calcium in the urine (hypercalciuria; generally indicated by greater than 4mg/kg of calcium in a 24 hour urine collection), the presence of kidney stones, the deposition of calcium in the kidneys (nephrocalcinosis), the presence of red blood cells in the urine (hematuria), abnormally low phosphate levels in the blood (hypophosphatemia), impaired kidney function (chronic kidney disease) and a history of Dent disease in the family that follows an X-linked pattern. The diagnosis may be confirmed by a genetic test.
Urine tests can be done to detect the presence of low molecular weight proteins and calcium. Blood tests may reveal low potassium and low phosphate levels. A genetic test may help confirm the diagnosis. The genetic tests examine the chromosomes to detect changes in the 2 genes known to cause Dent disease (CLCN5 and OCRL1).
There is no specific treatment for this condition. Symptoms are treated as they present themselves. Thiazides diuretics can be used to reduce the levels of calcium in the urine and prevent the formation of kidney stones. Angiotensin-converting enzyme (ACE) inhibitors or angiotensin receptor blockers (ARB) can be used to diminish the amount of proteins in the urine and try to prevent kidney damage, although this approach may not work well in Dent disease. Sometimes patients are given potassium citrate for prevention of kidney stones.
However, the efficacy of these treatments is unclear and they can cause side effects. Potassium and phosphate supplements are used to correct low potassium or phosphate levels.
If the condition progresses to end-stage kidney disease, dialysis or a kidney transplant might be needed.
People with Dent disease have a good vital prognosis. End stage kidney disease has been reported to occur in 30% to 80% of males between 30 and 50 years old. However, Dent patients do well with kidney transplantation, and the disease cannot recur in a transplanted kidney.
Dent’s disease severity differs on a case by case basis. Individuals with Dent’s disease may experience mild symptoms such as low molecular weight proteins and calcium in their urine without other symptoms of discomfort. Others may experience kidney stones, chronic kidney disease, and even kidney failure. Some cases of Dent’s disease can worsen over a person’s lifetime, leading to kidney problems and kidney failure between the ages of 30 to 50. Still others can continue a relatively symptom-free life managing their symptoms and taking care to prevent kidney degeneration.
The Rare Kidney Stone Consortium at the Mayo Clinic has established a registry of individuals with rare or otherwise unidentified kidney problems. Registering as a part of this list provides doctors and researchers with more information to find linkages and conduct more research on rare diseases. For more information, e-mail rarekidneystones@mayo.edu
https://rarediseases.org/rare-diseases/dent-disease/
https://ghr.nlm.nih.gov/condition/dent-disease
https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-5-28
http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=1652
Last updated 16 Dec 2024, 07:45 AM
16 Dec 2024, 07:45 AM
Hello! I use a translator, so my message may not be correct.
I am the mother of a 7-year-old boy with type 1 dent disease. Which of the forum participants has type 1? How old are you? What are you being treated with and what are the results? My son was prescribed: Enalaprilum to fight protein in the urine, as well as Blemaren to fight calcium deposits in the kidneys.
At the moment, he has stage 1 chronic kidney disease, protein in the urine up to 1 gram and calcium deposits in the kidney pyramids.
I wonder at what age the deterioration occurs. I want to know what to prepare for.
22 Nov 2020, 06:32 PM
Hi Jill!!! I am excited to get to know all of you!!!!
Jen
22 Nov 2020, 06:26 PM
Greetings beloved Dent community!
The time is NOW! So many advances in science and so many people in need!
Please respond with your intentions to join in on the conversation about how we can find a cure and BEAT Dent disease! Together we're better!!!
All my love! Jill (The Dent Disease Foundation, The Dented Kidney)
Last updated 29 Sep 2016, 11:45 AM
29 Sep 2016, 11:45 AM
Lada, is this different from the registry at Mayo? Deb Duarte
28 Sep 2016, 04:25 PM
Dear Dent mothers, fathers and patients, We have worked hard to create the survey at RDCRN (Rare Disease Clinical Research Network - NIH sponsored). No good response yet - only about 10 patients finished. Link below, please consider!!! https://www.rarediseasesnetwork.org/cms/rksc/Get-Involved/Contact-Registry This is an easier, faster form of research and allows people from all over the world to do it. You will be asked to join contact registry and then do the survey. Good luck! Takes 10 min for moms and a little longer for patients - parents can do that one as well, even if kids are over 18! Please remember, the outcomes of this disease depend on your participation. It is a slow process, but if there is no process, there will be no outcome. My warmest regards, Lada
Last updated 28 Sep 2016, 10:14 PM
28 Sep 2016, 10:14 PM
Ask them to do phosphorus, FGF 23 and 1,25 vitamin D. Good luck! Who is your nephrologist?
28 Sep 2016, 09:36 PM
Hi Lada We are in the UK - I met you when you came to the RKD symposium 2 years ago. My son is on the Dents registry and we have filled out all the forms again recently for Barbra Seide... He is also now seeing a metabolic specialist, so if you let me know what tests you require, I can ask at our next appointment in October.
28 Sep 2016, 08:34 PM
What is his serum phosphorus? If you are in the US, we could include him in phosphorus study and measure phosphorus related hormones which I believe are extremely important for growth but not routinely measured. Lada
Last updated 17 Jun 2016, 09:03 PM
17 Jun 2016, 09:03 PM
Hi K - good to hear from you. Glad your son's kidney function is stable. FJ is doing ok, thanks. Been on dialysis for a year but we're hoping he will get a kidney transplant later this year, fingers crossed!
6 Jun 2016, 04:06 PM
HI Val - not been on the site for a while. How is FJ doing? We met in London 2 years ago. My son is now 14 and has been on potassium citrate for several years now. His kidney function is stable and well maintained with no sign of stones as yet. Best wishes. K
16 Nov 2015, 10:02 PM
Thanks you, Minu. That is very helpful and encouraging news. Sorry your husband has had problems too. FJ has always had stones, but fortunately they haven't caused him problems so far. Interestingly, he has never been prescribed or taken potassium citrate.
Last updated 14 Jun 2016, 06:37 PM
14 Jun 2016, 06:37 PM
Do you have the results of this clinical trial yet? If so, should we increase phosporous in the diet and which foods are best?
9 Apr 2015, 02:30 AM
Great! Thanks for reaching out. I did not hear from the research coordinators but will ask. I'll email you. Lada
Last updated 6 Jun 2016, 03:43 PM
6 Jun 2016, 03:43 PM
Is there going to be a conference this year? I haven't heard anything yet, and last year they started talking about it around march or april.
Last updated 12 Apr 2015, 02:17 PM
12 Apr 2015, 02:17 PM
Hi all, I have response from Asdent, they are already in contact with Mayo Clínic, so I hope your collaboration will be great for both. Big hug
7 Apr 2015, 04:17 AM
And again, Lada, if you need any translating or interpreting between Spanish and English please feel free to use me any time. Daniel should be somewhat able to help too.
Last updated 8 Apr 2015, 06:27 AM
8 Apr 2015, 06:27 AM
My son Zander was dx with dents at 5 yrs. Now is 10.5 yrs. He is 4 ft tall my side.of family 8s short stature. His dad however.is 6ft 8 inch. We started endocrinology and the hand xray. Awaiting MD to get back to me from Stanford University. He had been seen at Stanford for 5 yrs now and luckily dr.potter there was able to dx him early and her him on chlorthalidone. (Sp) which he has been on since.but with varying dosages. He is also skinny. His wt is 56 lbs finally and that has taken 3 yrs to get there. As far as po4 he takes 750mg bid. Neutral phos. 2000 units.vit d just restarted that last 3.months. daily. 80 me kcl 30 20 30 dose during day to combat chlorthaladone k wasting. Avg. K level is 3.3-3.5. Lab about every 3 months. Also takes a milo ride to kick up his k levels. I have Zander in the study, or at least I returned the papers and hopes his data helps research. My concern is the obvious future kid. Failure, and transplant if and when it comes to that for him, but his overall fitting in. Being so short does not help in school. To make learning an issue he.was a.late talker 3 years old to make a 5 word sentence. Now he won't shut it. But he has adhd, and that lack of concentration and taking care of his disease in his future worries me. He is well aware of all his med and the rationale for their continued use and dose changes. It seems as if.from reading other posts the correlation of growth and learning is a factor is this disease process. Zander mom T
22 Jan 2015, 01:37 PM
I have the hypothesis that possibly Dent and Lowe patients don't get enough phosphorus in their bone as they hit the potential growth spurt (because they lose some through their kidney). One way to prove that is to show that the major hormone that causes release of phosphorus in the urine is below normal in Dent. So far 3/4 adult Dent patients in my study have it. Now I want to see if children (in particular) children in puberty have that as well. Growth hormone also increases phosphorus absorption in the kidney, and it's possible that that is the way it works. We don't know which effect it has on the bone of Dent kids. Lada
21 Jan 2015, 11:59 PM
I have three children, one with Dent's. Both of my two children without Dent's are tall...medium to extra large framed. My son with Dent's is thin, small framed, and definetly grew at a different rate. For a frame of reference, my 12 year old is 5'10 and 170 pounds. My 15 year old with Dent's is 5'6 and 110 pounds. My son also had sensory processing disorder.
| Title | Description | Date | Link |
|---|---|---|---|
| Dent Registry |
I am happy to inform everyone that Dent Registry is started at Mayo clinic. We hop that we can gather more information and advance knowledge on the disease and therapy. We are looking to enrol all patients with Dent all over the world. If you are interested, please check out our website. Please feel free to ask any questions.
Lada |
03/20/2017 |
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Community Leaders
LadaBL
I am a nephrologist (kidney doctor) who works at NYU in New York City. National Institutes of Health has sponsored research of Dent disease starting Sept 2009 which includes, and starts with, forming Registry of Dent disease patients.
Dent disease manifests usually with low molecular weight proteinuria (loss of protein in the urine) and often with kidney stones or even calcifications of kidney. Significant number of patients develop kidney failure and need dialysis or transplantation.
Registry means collection of information on individual patients which is then stored, anonymously, in one database. That allows us to analyze collected information on large group of Dent patients, which has never been done before, because physicians typically take care of only few Dent patients (usually 1-5).
Our website is http://www.rarekidneystones.org/dent, where you can look up the available information.
Contact:
Barb Seide| Study Coordinator | Mayo Clinic Hyperoxaluria Center | Nephrology Research | Phone: 507-293-4112 | 800-270-4637 | fax: 507-255-0770 | seide.barbara@mayo.edu | hyperoxaluriacenter@mayo.edu.
I would be happy to answer any of your questions. My email is lada.bearalasic@nyumc.org or LadaBL@yahoo.com.
Several people from this site have contacted us. Congratulations for making the initiative and moving the knowledge forward!
Stay strong!
Lada
Expert Questions
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I just saw te question from Mari Carmen from Sevilla in Spanish. I don't know hoe long ago she wrote but I can translate.
".Hi Lada. My 14 year old son has been diagnosed with Dent 1. He has losses of calcium, proteinura and hematuria. They are only giving him acalka and now Vitamin D. But he is not as tall as he should be for his age, and now two small bumps have come out on his chest. The doctor says this is normal growth but I am very concerned. Thanks for your answer.
Answer
Best,
Lada
My son has ADHD and they are wanting to start him on medication. Do these types of medications negatively affect the kidneys?
Answer
Good luck!
Lada
Answer
Best,
Lada
Answer
Lada
Answer
I do not speak Spanish, unfortunatelly.
If you were asking if it was expected to have high calcium in the urine for Dent patients, I can tell you that it is very common.
Maybe you can find somebody to translate to English?
Best Regards,
Lada
Answer
Usually, in our lab I think it takes about a month.
I have asked our geneticist and will let you know.
Lada
Found out: 6-8 weeks on average.
I have a question about Dent's Disease & its progression. I realize you can't predict what is going to happen with my son, but I am curious as to whether you have heard/seen any trends with regard to its progression. My son, Matthew, turns 15 years old next week. His creatinine is 1.2 as of today & he weighs approximately 114. His creatinine has been going up .1 for the past 4 labs. He has labs every 3-4 months. At this rate, if it keeps progressing at this rate, he will need a transplant before he reaches 20. I am very concerned. Are there any statistics? Could puberty cause the creatinine to increase at a faster rate & then maybe it may slow down as he gets older? What is the average age of transplant with this disease? Is there anything that has been found to slow the progression? Another thing.....can a carrier be a potential kidney donor? I have 4 daughters & 3 of them are Dent's carriers. Thank you so much for your time.
Answer
I would not worry about the transplant at this time, his kidney function is very good.
Carriers could theoretically be donors, however we are not sure if we recommend it or not.
If the donor has proteinuria or stones, it is probably not such a good idea. It has been done, however.
It would have to be decided on case to case bases by a transplant center.
As the child grows and gains muscle mass, the creatinine could increase.
Citrates have been shown to decrease progression on mice, nothing known with certainty on humans.
ACE inhibitors when significant albuminuria potentially beneficial, no data.
Thiazide diuretics? Unknown if affect progression.
You see, patients are asking us for advice but we have no data and cannot recommend.
Then we try to get data but patients are reluctant to participate in research!
And we go in circles.
In our study we are trying to see if phosphorus could be beneficial in reducing calcium in urine, kidney damage instead of thiazides that have side effects often difficult to tolerate.
Regards,
We could talk on the phone this weekend, or Fri pm if you like, since this is so complex.
My cell is 917-572-6379
Lada
Answer
We have heard of a mother who has donated the kidney to her son and both were doing well, however there is no clear recommendation.
If you actively form stones, and have significant stone on CT and have significant proteinuria, that is probably not a good idea.
I would say, you don't have absolute contraindication but a relative one and you would have to be evaluated by a transplant center.
Thank you for responding to my earlier question. My son is 8years old, and we have since stopped the enalapril because it was having absolutely no effect on him and was making him feel bad. We recently discovered that my brother, who is 32, has Dent's also, and he is in kidney failure and will be started on dialysis soon. We are hoping this is not typical and this is not the path that my son will go down. Does kidney failure usually onset this quickly with Dents pts? Our son is on the dent's registry and we are willing to enroll him in the study and I'm sure my brother would participate also.
Answer
This is a rare disease more unusual in children and pediatricians are better in making the diagnosis.
It is in the expected age range that your brother developed advanced kidney failure, however an early part of that age spectrum. Usually for Dent, dialysis is needed between 30 and 50, so this was early.
Our goal is to study more the disease and test interventions that could delay the progression of the disease. That is why we are doing this study.
The good news is that just because they have the same mutation, the disease does not have to behave in the same way in the two of them. Variability in the family is quite common.
I am glad you are in the registry. As soon as our consent form for children is approved, I will let you know. Unfortunatelly, for now we are not testing the patients with advanced disease if they have high PTH (parathyroid hormone) and your brother likely has it above normal. You can ask him if he knows, but he should definitely be in the registry for any further research and for better understanding of disease.
Community User List
I am the mother of a 13 year old boy, from Florida, diagnosed with Dents disease in May of 2013. The disease was found by accident after a sick visit to his ped. for a upper respiratory...
I am the mother of an 20 year old son who has been diagnosed with Dents Disease, I would really like to hear from other people who have the condition and share information
I am a carrier of Dent 1. My father and 1 uncle died from the disease back in the 50's, although two other uncles had stone formations. My daughter is a carrier who has a carrier daughter...
We live in Yarmouth, Maine.
I have 3 children with Dents Disease which I passed onto them. My brother had end stage renal failure at 37 then a donated kidney from our dad. That eventually failed and he had a second...
I am a nephrologist (kidney doctor) who works at NYU in New York City. National Institutes of Health has sponsored research of Dent disease starting Sept 2009 which includes, and...
My lovely son is dent's disease
I hope more information about dent's
My english is poor. But reading sentense
is possible
thank...
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